Don't Get Your Panties In A Twist, Mine Already Are

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Don't Get Your Panties In A Twist, Mine Already Are

My mother went in for a regular baby scan - and came out with a baby.

That’s usually how I start my story with strangers, and it is how I will begin it with you. As far as my parents were concerned, I was a healthy eight-month fetus, in a healthy body, with no problems at all. That did not end up being the case. I was born a month early via Caesarean - and came purple and tiny and screaming into the world. I spent a considerable time in an incubator (I was three pounds at birth, and most babies are around seven); eventually I went home with my parents.

Fast forward two years later, and my parents knew something was up. I wasn’t walking, and my left hand was often clenched. The doctor insisted I was just a slow learner; they weren't convinced and neither were my grandparents. Thanks to them, I was seen by a specialist, who stated something that was no doubt upsetting at the time.

I had suffered a stroke.

I was soon diagnosed with left-sided hemiplegia, a form of cerebral palsy, which means that my left side is weaker and smaller than my right. As a result, I tire easily. I don’t have full use of my left hand (I’m typing this one-handed, by the way). I limp because of leg length discrepancy, which in turn tilts my pelvis and strains my spine and joints. I’ve started using acupuncture and regular pain medications to deal with it. Five surgeries later, and I’m pretty sure this is as good as it gets.

I’ve always had pain. I view it as almost a shadow-self. It’s always there, lingering, even if it’s lesser today than it was yesterday. I became so used to it I never told anyone that it was there. It’s only now, in my early twenties, that I am confronting the fact that I am in pain. I’m disabled and it hurts. It has got worse year by year; often now I rest in bed during the day because it’s the most comfortable position I can find.

Yet because I never spoke about it unless I was physically sobbing with agony, I sometimes find that I am not believed. If you looked at me, you would not necessarily know that I am disabled. I hide it well; I’ve learnt to do so in a world that judges you for the slightest imperfection. It’s an instinct now. I have friends who never realized I was disabled until they saw me on a tired day and realized that I limp. They assumed I had a sore foot - which isn’t wrong, but I had to tell them what causes the sore foot.

Not that I mind. I’m happy to educate people about my condition, my disability. I firmly believe openness can help change attitudes for the better. I was diagnosed with depression and anxiety in early 2013, and, as with my hemiplegia, I am fighting to change ableist attitudes to both mental and physical illnesses, and I do so via social media and writing as best I can.

My body is nowhere near perfect. But it is my normal. It’s all I know. Unlike people who become disabled, I have no experience of a non-disabled body. I couldn’t tell you what it feels like to type with two hands, or carry heavy things, or dress myself in the morning without getting my damn panties in a literal (and I do mean literal) twist as I pull them up my legs. I can’t cut food like squashes or melons. Hell, I can’t even cut bread properly half the time. I still get frustrated beyond belief. I curse, I seethe, I sometimes cry. It makes me feel better for a bit. Only a bit. And then I’m back to being grumpy because guess what? It’s hard to be happy when you’re hurting or you feel inadequate. There will forever be a part of me that does.

I’m nearly twenty-three now. I’ve been disabled all my life. There’s no cure for it; you can’t cure something that’s fundamentally shaped both your mind and body while growing up. It would alter me. And I’m not sure I’d want that huge an alteration. I’m not sure who’d I be. The thing is, deep down, I like me. I like my brain, my spirit, my personality. I just have a body that grew as best it could after trauma. It’s a brave, stubborn, fragile yet strong body. It’s my body.

And despite my anger, despite my resentment -

I love it very much. 

Image Description: A young woman with curly brown hair and glasses sits in a restaurant with teacups in front of her, smiling and holding her phone. 

Image Description: A young woman with curly brown hair and glasses sits in a restaurant with teacups in front of her, smiling and holding her phone. 

Lily is a a 22 year-old student studying for a master’s in Medieval Literature at the University of Edinburgh. She can be found educating on ableism and disability via her Twitter (@paperstainedink) and her YouTube. You can support Lily here

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Sick Chicks Ambassador: Katy Brennan

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Sick Chicks Ambassador: Katy Brennan

Becoming sick is similar to an avalanche. It hits all at once and a lot harder than expected. When you think that it can’t get worse, more and more piles on until you are buried alive. This is what it felt like to be diagnosed with Ehlers Danlos Syndrome and its many comorbidities.

My story starts in December of 2014 when I tore my first shoulder. I was at cheerleading practice when I decided to do a backhandspring; little did I know that this simple flip would flip my life forever. I completely dislocated my shoulder and proceeded to have surgery on it in February. Everything seemed fine for the few days after surgery, until I picked up my book bag and tore my other shoulder. These incidences were written off as coincidence. I was told that many young women have naturally loose shoulders and that I would be fine once both were surgically repaired; these doctors were wrong.

In January of 2016, I dislocated my knee walking down the stairs. Nothing provoked this incident or caused me to fall, my knee cap just slipped. Later at my doctor, he picked up my leg to examine my knee, and my hip fell straight out of the socket. This was the first day that a doctor said the words “Ehlers Danlos Syndrome”. Ever since then my life has been a whirlwind of body systems ceasing to function. Diagnoses have stacked up and my medical binder has grown and grown in width.

Since January of 2016, my list of diagnoses has grown to include Celiac Disease, Postural Orthostatic Tachycardia Syndrome (POTS), and Hemiplegic Migraines. All of these diagnoses have been scary in themselves, and each has exacerbated the next. With my celiac disease, I could not eat anything for months which resulted in lots of fainting and migraines presenting as stroked (hemiplegic) which in return seemed to cause many more dislocations. This is when I realized that Ehlers Danlos Syndrome is an avalanche disease, and with every new mound of snow, I will have to continue to dig myself out.

So far, I’ve done a decent job of keeping the avalanche under control. I write, advocate, and tell my story to anyone who will listen. I intern with politicians and spread my story, I have written over 70 articles, and now I am a Sick Chick Ambassador. My journey won’t start here. I plan to continue on solid ground, building myself up and standing tall on the avalanche that is my body. I will continue to advocate and spread awareness for this rare condition, and I could not think of a better way to do that than being a Sick Chick Ambassador.

 

Image Description: A young woman, Katy, smiling with dark brown hair in a field holding a small bouquet of flowers. 

Image Description: A young woman, Katy, smiling with dark brown hair in a field holding a small bouquet of flowers. 

 

Katy Brennan is a teenager who fights Ehlers Danlos, POTS, celiac and hemiplegic migraines daily. She has made it her mission to turn her struggle into something positive through her writing and advocacy. Connect with Katy on Instagram at @katy.brennan, on Twitter at @katie_brennan7, and on The Mighty

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Sick Chicks Ambassador: Eleanor Goulden

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Sick Chicks Ambassador: Eleanor Goulden

When I first got to college, I began to develop periodic fevers. Every month or so, I would develop a low grade fever combined with intense sweating, fatigue, and malaise every day for 2 to 3 weeks straight. It took me multiple months to think anything of it. I had always been someone with less than average health. In middle school, I received monthly infusions for an immunodeficiency, and had recently been diagnosed with gastritis. I also suffered from severe asthma and anxiety and depression, but never once considered myself chronically ill or disabled. During winter break of that year, I sought help from my primary care physician, who sent me to an immunologist, assuming that my immunodeficiency was back and had taken a new form. Thus began the slew of doctor’s appointments.

I’ve been diagnosed with a half dozen syndromes and illnesses over the past two years of investigation. What started as a reappearing Immunodeficiency morphed into Tumor Necrosis Factor Receptor-Associated Periodic Fever Syndrome, IBS, Somatic Symptom Disorder, Hypochondriasis, Fibromyalgia and most recently, Postural Orthostatic Tachycardia Syndrome.Meanwhile my symptoms changed and got gradually more intense. Each doctor had their own theory for my symptoms, my medical history slowly growing into an immense list of misdiagnoses and confusion, leaving me to wade through and pick out what made the most sense. My diagnosis journey is nowhere near over.

Around half way through the entire process, I began to identify as disabled. My health problems were having a significant effect on my life, and I was forced to reach out to the disabilities center at my school to receive accommodations. I received pushback for this identity change, however, from a variety of individuals. Professors called me a safety hazard and told me to drop their class. I had to drop multiple classes and could no longer continue the job I loved so much. I spent more time away from college and more time at various health centers in Orange County and Los Angeles.

My parents pushed back against my identifying as disabled, similar to their involuntary flinches when I call myself queer. They couldn’t understand why I wanted to call myself these terms that had such negative connotations. I was insulted at first by their hesitancy. But I soon realized the history of these terms, noting how “queer” was often used as an insult, and that “disabled” holds a similar past. Nevertheless, I’ve found pride in both these identities, as they allow me to relate myself to larger groups, people who I can relate to on a level different from those who do not share these labels. It allows me to connect to a rich history of powerful activists and role models, from the Trans women throwing bricks at the Stonewall Inn in 1969 to my beautiful sick chick sisters who strive for legislative change for those with chronic illnesses in 2017.

I refer to myself as “queer” because it is what best describes me. I knew I liked girls from a very young age, my “sexual awakening” sadly not arising from a best friend or a popular tween starlet but from the pages of a Victoria’s Secret Magazine. I grew up randomly selecting boys from my classes to be my “crush” when in reality I didn’t really care for any of them. I always knew I was different in the way I was attracted to people, not unlike the way I knew I was different in how much school I missed due to sick days. I didn’t allow myself to really come to terms with my identity until junior year of high school, when my best friend cameout to me as gay and a few weeks later I confessed my personal confusion over my sexuality via text. Similar to all the diagnoses and misdiagnoses I’ve endured, I continuously labeled and mislabeled myself until I finally settled just on “queer.” I’ve toyed with straight, lesbian, gay, bisexual, pansexual, even asexual, but never felt that anything really fit. I’ve always been much too fluid for such a label.

Although it might not lead to the easiest life, I’m happy to queer and I’m happy to be disabled.Both identities are rich and unique, and I’m proud that I can relate to so many amazing people that share the same labels.

 

Eleanor Goulden is a 20 year old college student from Irvine, California. She is a rising junior at Occidental College in Los Angeles where she studies Theater and Cognitive Science. When not in class, rehearsal, or bed, she does her best to involve herself in the activist community at and around Occidental.

 

Image Description: A young woman, Eleanor, with short light brown hair, smiling over her shoulder, standing in front of a window.  

Image Description: A young woman, Eleanor, with short light brown hair, smiling over her shoulder, standing in front of a window.  

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Sick Chicks Ambassador: Ciara McCann

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Sick Chicks Ambassador: Ciara McCann

Empowerment is what I feel when I know I am being seen.

Growing up, theater is what made me feel empowered. I spent my childhood and adolescence partaking in voice lessons and dance classes. I went to an arts high school, and I breathed theater like air. When I was on a stage, the most vulnerable parts of me were exposed and visible to others, I knew who I was, I was unwavering in what I wanted for myself. I was absolute. After I graduated, I got a job as a performer for Disney. I worked for the company almost four years, in Anaheim, CA and Tokyo, Japan.

Growing up, I was also sick. Pediatricians told my parents that I would eventually grow out of it, but I didn’t. All of the sudden, I was spending my weekdays in doctor’s appointments and weekends in bed. I had no choice but to quit my job, and move back in with my parents. My unwavering sense of salience, now decrepit. I knew I was sick, but my lab tests consistently retorted with normal results. I looked healthy on paper, and I looked healthy in person. I heard responses like “You’re probably just stressed,” “You have an anxious stomach,” and my personal favorite, “You’re a woman.”

I was sick, but my sickness was invisible.

 Attending an arts high school provided a wonderfully positive environment for me and my peers to express ourselves. “Coming out” should be a liberating experience, unique to each individual, and this was widely understood and accepted on our campus. An environment for people to uncover and make themselves visible is important. People deserve to celebrate who they are.  

Although it wasn’t until my high school boyfriend and I broke up that I felt comfortable expressing my sexuality with close friends. I knew I liked women, I knew this was something I should celebrate, but somehow I thought my attraction to men made me less deserving of that celebration.  

How was it even possible for someone to be attracted to women and men? Maybe I wasn’t queer at all, maybe I was just promiscuous or greedy. Maybe I was going through a phase. Bisexuality and Pansexuality can seem taboo to some because of the notion that you have to pick a side. And when I was younger, I was surrounded by people who, in fact, did pick a side. They liked women or they liked men. They were gay, lesbian, or straight. They were decisive; firm and unyielding in their identity. And I was the grey area.

I was queer, but my queerness was invisible.

I was finally diagnosed with Postural Orthostatic Tachycardia Syndrome, or POTS (among other illnesses) in January 2016. A diagnosis definitely provided solace from the ominous uncertainty. Still, the backhanded comments from doctors and friends persisted. “But you look fine, you don’t look sick at all.” I still appeared healthy on paper and in person.

Having a diagnosed invisible chronic illness, without an identified cause or cure can make you feel like you're caught in the dark. Discovering Sick Chicks was like someone had switched on a light. Yes, I am sick. My chronic illness doesn't define me, but it exists and it is a part of my life. I will say that I am sick, and I will be heard. In my sickness I am strong and I am visible.

The same goes for my sexuality. I like men, women, and anyone in-between. This does not make me confused or promiscuous, this makes me bisexual. I will say that I am part of the LGBTQIA+ community, and I will be heard. I am firm and unyielding in my identity. I am visible.

To be visible, to be beheld in your you-ness is a powerful thing.

Illness is subjective, sexuality is subjective, the human experience is subjective. Subjective, but also perceptible.

I am humbled to be part of such an inclusive and supportive community, and as an ambassador, I hope to encourage this sense of empowerment and visibility onto my fellow Sick Chicks.

 

Ciara is 23 years old, and currently works as an Instructional Aide for the Disability Services Department at a high school. She is going to school with aspirations to become a scientist, and pursue a career in STEM. Follow her on Instagram and twitter at @ciaratmccann.

Image Description: A young woman, Ciara, with short brown hair and a septum piercing is smiling in front of a white wall wearing a grey tank top with a coral sweater wrapped around her waist. 

Image Description: A young woman, Ciara, with short brown hair and a septum piercing is smiling in front of a white wall wearing a grey tank top with a coral sweater wrapped around her waist. 

 

 

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Sick Chicks Ambassador: Carolanne Monteleone

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Sick Chicks Ambassador: Carolanne Monteleone

Sometimes it’s hard enough to have one thing that sets you apart from your peers, let alone having two things that make you different. At the age of 21, two major life events occurred: I became chronically ill with gastroparesis (and a whole list of other illnesses as well) and I came out to my friends, family, and strangers as lesbian.

When I became ill, I realized there wasn’t much in my life I could control. My body was dictating my days and it was difficult to come to terms with my new limitations. In the midst of the chaos of life with a chronic illness, I became aware there was still one thing I had control over: my own happiness.

Being true to myself brought me happiness; the ability to openly love brought me happiness. But in order to gain my happiness, I had to be willing to lose as well.

I knew the risks of coming out. Luckily my family was supportive and for the most part my friends were too, but in the spoonie community I found myself hesitant to let people in. The chronic illness community is made up of so many diverse people with different viewpoints and beliefs, and I knew not everyone would be accepting. It’s a sad feeling knowing that the friends you’ve bonded with over something as personal as a chronic illness could look at you differently once they know you’re a part of the LGBTQ+ community. I concluded that if someone cannot love me unconditionally, no asterisks included, I do not want them in my life. This lead to a conscious decision to remove certain fellow chronic illness warriors from my life.

I’m lucky to be secure in who I am, I know not everyone is. Being so open with my journey has given me the gift of being a confidant to many other spoonies who are discovering they aren’t straight or cis. This honor is something I take extremely seriously and I’ve made it my mission to bring intersectionality and inclusion to the chronic illness/disabled community. I advocate for LGBTQ+ members to be included and accepted because no one should feel ousted by a group where they are supposed to receive love and support.

I am ecstatic to be a Sick Chicks Ambassador. I hope to be safe haven for my fellow LGBTQ+ spoonies and an educator to our chronically ill allies.

 

Carolanne is a 25-year-old activist who is heavily politically involved regarding social equality and change. Follow her on Instagram at @carolannemaria and on Twitter at @carolannemm

Image Description: A young woman (Carolanne) with long blonde hair, poses in a selfie against a white tiled wall. She is smiling and tilting her head to the right. She is wearing a white t-shirt with unclear lettering. 

Image Description: A young woman (Carolanne) with long blonde hair, poses in a selfie against a white tiled wall. She is smiling and tilting her head to the right. She is wearing a white t-shirt with unclear lettering. 

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Sick Chicks Ambassador: Taylor Jones

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Sick Chicks Ambassador: Taylor Jones

I was the Crazy Girl in high school; the Drama Queen, the Weird Chick, the Psycho. Something was wrong with me. I was a ticking time bomb; one minute I would be fine, laughing with friends, the next I would be crying, hysterically in the middle of class, sometimes even causing scenes and yelling. I was frequently triggered, and an easy target to bullies as an adoptive child. People didn't understand me, I didn't understand me. Out of everyone who disliked me, I'm pretty sure I disliked me the most. I was broken; emotional, forgetful, and unfocused. 

It wasn't until my adulthood that I would figure out what was actually wrong with me. I had Borderline Personality Disorder, with Dissociative Amnesia, Post Traumatic Stress Disorder, and Obsessive Compulsive Disorder. I wasn't the Drama Queen my peers had assumed me to be; I was sick, with mental illness stemming from traumas that have taken place over the course of my twenty-three years of living. My mind doesn't work the way a "healthy" mind would. My mind pushes me to the edge, makes me forget chunks of my life, and on its worst days, makes me suicidal. I'm a sick chick. 

For a long time I saw myself as a victim, as many do with mental illness. Mental health is stigmatized, even in this day and age. We, the people with mental illness, are stigmatized everywhere in media; the manic pixie dream girl, the psycho killer, the moody drama queen. We have zero respect from the media, so we have zero respect for ourselves. I started to get tired of calling myself what I saw...even more I was tired of what I was seeing. So, I decided to stop viewing myself as a victim to mental illness, and started calling myself what I really was; a mental warrior. 

I spent the past few years building my own empire; speaking out about my mental illness, exposing the truths of my personal life. I didn't want another girl to go through school just thinking she was crazy or over dramatic. I didn't want anyone else to suffer in silence. I wanted to break the stigma. And then I discovered Sick Chicks, a site to empower the girls who are sick. I felt at home reading the articles. I knew I had to be a part of it all. 

I am proud to be Sick Chicks new ambassador. I am hoping to help further break the stigma of mental illness, and hoping to help girls speak out about their mental illness, even if it's just to a family member or close friend. I want to help break the stigma; and here, I know we can do it. 

 

Taylor is a 23 year old stay at home mom and author. She is an advocate for mental illness and is a new member of the Sick Chicks team as an Ambassador. Follow her on instagram at @authortaylorjones and on Twitter at @taycowrites. 

Image Description: A young brunette woman with blue eyes is smiling in a selfie, she is wearing a red plaid flannel and is posed against a green tile wall. 

Image Description: A young brunette woman with blue eyes is smiling in a selfie, she is wearing a red plaid flannel and is posed against a green tile wall. 

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Let’s Talk About the Ugly Parts of Mental Illness

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Let’s Talk About the Ugly Parts of Mental Illness

When I started high school, it felt like the beginning of the rest of my life. Until it felt like the end of my life. About a month into ninth grade, I developed depression and it just got progressively worse. I had already been diagnosed with generalized anxiety disorder and Attention-Deficit/Hyperactivity Disorder (ADHD) at a young age. The combination of depression, anxiety, and ADHD created a living hell for me and I honestly have no idea how I survived. Symptoms showed up in ugly ways. I started self-harming. I couldn’t sleep. I started restricting my eating. I would go days with nothing more than an orange and a granola bar. I didn’t take care of myself. I didn’t wash my hair for weeks and I hardly changed my clothes. I lied to people I care about to protect behaviors that were destroying me. I lied to the world about so much. It wasn’t pretty.

The inside of my mind wasn’t pretty either. I started having suicidal thoughts. I imagined myself dead in the most horrific ways and felt relieved that I had a way out. I had thought patterns so twisted that looking back I realize I was almost delusional. I was so far down a pitch black hole I couldn’t tell what was healthy and what wasn’t. I was paranoid and terrified of the world. I would become overwhelmed by stimuli so easily that too many people in one room would cause me to shut down. The summer after ninth grade I started experiencing dissociative episodes and became afraid to leave my house. By the time that school started again, I was so far down a hole that there was no way that I could go to school. I barely left my room and I barely talked to anyone. So, I took a medical leave of absence and spent what would have been my tenth grade year trying to get better. It has been extremely hard, but I have gotten back on my feet and I have come a long way.

One year ago, I thought I would be dead by the end of the year. I didn’t think that I would see 2017, turn 16, or be alive to write this. But, against all odds, I am and I have something to say. May is National Mental Health Awareness Month and I wish that the awareness that people give to simple, understandable parts of mental health issues was also extended to the more unsettling parts of mental illnesses. There are so many people who stay silent and don’t talk about their experiences because their symptoms are ‘scary’ or ‘weird’ to others, but that needs to change. Let’s raise awareness about how paranoia can take over your life.  Let’s raise awareness about embarrassing thought patterns. Let’s raise awareness about intrusive thoughts of awful things. Let’s raise awareness about how horrific suicidal thoughts can be. Let’s raise awareness about not washing your hair, changing your clothes, or brushing your teeth. Let’s raise awareness about how ugly mood swings can be. Let’s raise awareness about scratching yourself until you bleed. Let’s raise awareness about being afraid to leave the house. Let’s raise awareness about hallucinations and delusions. Let’s raise awareness about the lies disorders cause you to tell. Let’s raise awareness about all the ugly, hurtful, and unsettling symptoms and parts of mental illnesses; because, no, they may not be pretty, but mental illnesses aren’t pretty. They need to be talked about, just as much as any other type of symptoms. So, let’s make May and, hopefully, every month a Mental Health Awareness Month for every mental illness and for every symptom, no matter how small or how unsettling.

 

This Spotlight post was written by Genvieve Wilhelm a 16 year old who has dealt with mental health issues all of her life. She enjoys writing and raising mental health awareness. You can contact her at wilhelmgenevieve@gmail.com 

Image Description: A young woman (Genevieve Wilhelm) with long brown hair with teal dyed tips stands in front of a blue and red graffiti wall, turning and laughing at something. 

Image Description: A young woman (Genevieve Wilhelm) with long brown hair with teal dyed tips stands in front of a blue and red graffiti wall, turning and laughing at something. 

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Madi's Story: Cystic Fibrosis Awareness Month

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Madi's Story: Cystic Fibrosis Awareness Month

Hi! I am Madi Vanstone and I was diagnosed with Cystic Fibrosis (CF) at 8 months old. CF is a Genetic Terminal disease that affects the Lungs, Digestive System, Pancreas, Bones, and Heart. Death in CF patients is most often caused by Lung complications, and as of right now the only way to prevent this issue is lung transplant.

Despite my personal battles I do my best to improve the lives of other patients. I began raising awareness and funds for CF research at 1 year old. At 11 I started to get involved in advocacy. I fought the Ontario government for coverage to a much needed “miracle” medication that was saving my life (at the cost of $350,000 a year).  My fight was successful in 2014 when Ivacaftor (Kalydeco) was added to not only the provincial healthcare plan, but also across Canada. I began working as a Canadian healthcare advocate in late 2014.  In September 2015 I flew to California to accept an award where I met Shira Strongin as well as many other Patient Advocates. I am involved with CF Canada, and many other organizations to make a difference in the rare disease community.

I am now known internationally (SO COOL) for my efforts to evoke and encourage positive changes in the rare community.

The miracle medication I am on only works for 3% of the CF population, and that is why we are raising funds to help advance CF research to find a cure and save my many CF friends from this violent, progressive,  terrible disease. I will not stop fighting until a cure is found. I wouldn't wish this battle on anyone.

On May 28th I will be walking to raise funds and awareness for Cystic Fibrosis for the 15th time. You can read more about the walk and/or sponsor me by clicking on this link.

Your donation will go towards research to find a cure for Cystic Fibrosis.

CF might slow me down, but it will never stop me from doing what I love, advocacy.

Madi Vanstone is a 15 year old model and rare disease advocate from Ontario, Canada. You can follow her on Instagram at @madi.vanstone.  You can learn more about Cystic Fibrosis here.

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Chronic Love Bracelets

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Chronic Love Bracelets

April is Irritable Bowel Syndrome (IBS) awareness month! I was lucky to speak with Leah from Chronic Love Bracelets, who has IBS. I spoke to her about this project she is developing as well as her experience as a Sick Chick. Interviewing her was an absolute pleasure and my hope is that you all check out her project after reading this!

Leah found Sick Chicks after being diagnosed with IBS eight months ago. When I asked her what life lessons she learned from being sick she told me,  “I can’t just sit on my butt and feel sorry for myself.” This particularly stuck out to me because it’s a quality I see in many sick chicks, the desire to turn their situation into something positive, which Leah has done.

Leah is the founder of Chronic Love Bracelets, which are handmade, customized friendship bracelets she makes for women with chronic illnesses. “Each bracelet contains the colors that correspond with the customer’s awareness colors associated with their chronic illness(s). The bracelets have hearts on them to represent that they are not alone in their struggle. Having a chronic illness can be so isolating and depressing and just flat out sucks.” Leah told me. The goal of this project is for people to “wear their Chronic Love Bracelets and see that they are loved and supported and not alone in their fight with their illness(s).”

After receiving her diagnosis, Leah was inspired to start Chronic Love Bracelets and help others in similar situations, while simultaneously helping herself. “I was home in pain 24/7 and was really bored, depressed, and fidgety. I remembered how at summer camp I used to make friendship bracelets and thought that it would be a good way to keep my hands busy. I started Chronic Love Bracelets at the end of November and I have sent out a little over one hundred bracelets to women around the globe!”

Leah is wanting any and all involvement in this project from our community! “I am always looking for people to promote Chronic Love Bracelets over any type of social media! I also love donations in the form of Michael’s Craft Store gift cards, Cash, or string donations to make the bracelets!” Visit her website to make a donation or nominate someone you know (or yourself) to receive a bracelet.

Once again, thank you to Leah for being such a boss sister and here at Sick Chicks we look forward to supporting your project and seeing it grow!
 

Follow Leah at: 

Instagram: @chroniclovebracelets

Website: ww.leaveittoleah.us Email: eah@leaveittoleah.us

 

If you would like to be interviewed for a Spotlight Post, email contact.sickchick@gmail.com

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Laura's Story: Endometriosis Awareness Month

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Laura's Story: Endometriosis Awareness Month

We all share a fear of the unknown. This can be fearing how you did on a test, if you got into your dream college, or if a diagnosis exists. Everyone experiences these fears several times in their life, but it occurs more prominently with those who suffer from chronic illnesses. I for one can definitely vouch that the fear of the unknown is worse than receiving a bad news upfront.

This at first sounds absurd, but upon further inspection, makes plenty of sense. We have all been in positions pacing around a room, or even pacing in our minds awaiting important news. The suspense makes you anxious to the bone, and the anticipation is eating away at you. Now imagine that important news you’ve been waiting anxiously for, took 5 years to produce. For me, this was no hypothetical scenario, but in fact my life.

When I was in 7th grade P.E. on january 12th 2016, I was running the mile when out of nowhere came this awful stabbing pain in my lower abdomen, so strong it forced me to the ground. My teacher excused me to the nurse once I could get up. Initially I assumed this must be a side crampy from the large breakfast I had that morning, or due to not drinking enough water. I waited in the nurse’s office for about an hour and the pain had not subsided, so she called my mom and I went home. Later that night the cramping was slowly getting better but I felt this stabbing and shooting pain from the neck to my shoulders and my back. We went to the E.R and was told I had a ruptured ovarian cyst. The ER doctors told us that these textbook symptoms and that I should start to feel better in a few days and possibly consider getting an appointment with an gynecologist. It took us quite some time to process all this, but upon the seeing a specialist, more things became clear.

When I was younger, I got my period earlier than most girls, and it was extremely heavy and made me very sick, accompanied with excruciating cramps. I dealt with this for several years before anyone told me this is not normal. I thought everyone else went through 8 maxi pads a day and got dizzy all the time too. I tried not to complain too much because I thought it was normal, but it turns out these symptoms are warning signs for endometriosis.

After 5 years of experimenting with different forms of birth control, aygestin and estrogen supplements, to no prevail, we made to the decision to have an exploratory laparoscopy to officially diagnose or rule out endometriosis, which was the last resort. You see, endometriosis can only be officially diagnosed through surgery due to the fact that it is a bacteria that cannot be detected in blood work, ultrasounds or x-rays. When I saw my OBGYN for the first time, she told us endometriosis was possible, but wanted to exhaust every other option first, before surgery. So after 5 years of failed medications and the anxiety that comes with that, they found and removed a golfball sizes patch of endometriosis from the back of my uterus. After I awoke from surgery the first thing I said was “Please tell me it’s gone.” My mom and seemed to tear up a bit and whispered “yes” I was so incredibly happy with this news. I knew recovery would take a week or two but that did not phase me. I was willing to endure the recovery pain than go another day with a constant lurking uncertainty.


Laura Doti is an 18 year old afflicted with several chronic illnesses, which she doesn’t allow to define her. She is a proud supporter and participant in patient advocacy and is a member of her school’s Speech and Debate team.

Contact Laura:

Instagram: thedotister8

Twitter: lcdluckyy8

Email: lcdluckyy8@gmail.com

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Christina's Story: Feeding Tube Awareness Week

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Christina's Story: Feeding Tube Awareness Week

 This year for feeding tube awareness I have really been reminiscing about the last year.  Last year this week I had just had my very first feeding tube placed. I had such mixed emotions about it.  I knew I needed it, and I just wanted relief, but at the same time I had no idea what life was going to look like for me with a tube.  Would my boyfriend be freaked out?  What will my grandparents understand?  Will I be stuck at home all the time?  How will I have to dress to accommodate it?  

 I have a G-tube MicKey button.  It was supposed to be a GJ tube, but due to breathing complications during placement we had to stop the procedure. But honestly I have been perfectly happy with the G tube so far.  For me the tube serves a few purposes.  One, it allows me to bypass my esophagus as I am unable to properly swallow foods or meds.  They either go into my lungs or just sit in my chest.  The other benefit is that I am able to receive a hypoallergenic and easily digestible formula that doesn't trigger the same Mast Cell (allergic) responses that regular foods do and it is easy on my slow digestive motility. It has actually been a huge blessing in my life. I thought that I was going to feel more stuck at home because of it, but if anything I feel more freedom.  Now I can feel confident when I go out that I won't have to worry about finding food I can eat or feeling sick. I used to have to skip meals for a whole day if I had plans because the second I would eat I would start to be sick. 

 We don't know how long I will need the tube. We are doing our best to improve my swallowing and stabilize my allergic responses, but the truth is I don't really know what the future holds for me.  We don't even really know if the swallowing issues are due to all of the spinal instability/spinal cord compression I have had, the surgeries I have had to stabilize it, or if its just due to having a floppy throat from EDS.  So who knows, this could be my last feeding tube awareness week, or just the beginning.  I couldn't tell you. But I can tell you that its been such a powerful thing to be a part of.

Before having my tube placed I barely knew anything about feeding tubes (they aren't exactly something that comes up in a lot of everyday conversations).  And turns out Im not the only clueless one, because I have actually had to teach multiple nurses how to use one. I guess that MicKey buttons are especially uncommon, especially in my age group. There really needs to be more awareness around this stuff. Yes, people besides babies and elderly people sometimes need feeding tubes. No, I don't have an eating disorder. And yes, people with feeding tubes can actually live fairly normal lives, it isn't always just an end of life intervention. In fact, for many of us, when asked, we will tell you that it was really more like a beginning to life.  

 

This Spotlight Story was written by Christina Doherty, you can find her YouTube Channel and Etsy shop under the "Our Community" page as Water Color Me Impressed. Instagram: @watercolormeimpressed

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Taylor's Story: Feeding Tube Awareness

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Taylor's Story: Feeding Tube Awareness

Happy feeding tube awareness week! In honor of this week, I thought I would share my story of how I got a feeding tube.

 

My journey with feeding tubes started over four years ago. I was having stomach issues for three and a half years prior, but things did not get worse until I got pancreatitis my junior year in high school. After that, I started to have extreme pain every time I tried to eat that also included bloating, nausea, constipation, and distention. I started to rapidly lose weight and that is when I received my first tube. I had an NJ tube, or nasojejunal, which means a tube went in my nose and by passed my stomach so it is in my jejunal, or small intestines. I was able to gain some weight back and got my tube pulled out.

 

 

Towards the end of my senior, I started not to be able to eat again. The pain was too much to handle from eating. I started to get extremely thin and malnourished. I was then diagnosed with chronic intestinal pseudo obstruction, or CIPO. In short, CIPO is when your muscles and/or nerves cause symptoms like a bowel obstruction, yet there actually none. The intestines cannot contract and push food, stool, fluid, and air through the intestines. This diagnosis led me to be on total parenteral nutrition, or TPN. TPN is intravenous nutrition. It does not go into your GI tract, but instead through your veins. This allowed me to have a bowel rest and have nothing going into my stomach or intestines. A broviac line, which is a central line, was placed into my chest so I could have access to receive my TPN. After a few months I was able to gain back all of my weight. It was then decided to trial being off of TPN and try food again.

I was doing okay for a little with eating, but it did not last long. Once again I lost all the weight I had gained and then some. I was at my all time lowest weight. I went back into the hospital for immediate nutrition and it was decided that I should try going back to tube feeds instead of TPN. I had an NG (nasogastric) tube placed, which meant I had another tube go through my nose and this time it went right into my stomach. I gained back my weight again, but the feeds were causing so much pain, nausea, distention, constipation, and bloating still.

 (before and after getting nutrition for three months)

 

After more testing, I was diagnosed with gastroparesis. Gastroparesis means stomach paralysis. It is a motility disorder that delays gastric emptying so food slowly moves through your stomach and into your intestines or does not move at all. Because of this and my CIPO diagnoses, we concluded that it was best to go with a more permanent tube and a different type.

taylorpic4.png

I now have a GJ feeding tube. It stands for gastrostomy-jejunostomy, which means the tube is in both your stomach and intestines. I have this particular one so I can do tube feeds through the J port that goes into the intestines to avoid the pain of feeding into my stomach. The G port goes into my stomach to vent air out and to drain stomach acid.

While my feeding tube does not cure me from all my medical problems, it stops me from becoming malnourished. I still have pain and other symptoms, but I have a little more energy to do something every once in a while. Without a feeding tube, I would not be here. It has literally saved my life more than once and for that I am grateful to have one.

 

This Spotlight Story  was written by Taylor Kulp: I am 20 years old from Pennsylvania. I have multiple chronic medical conditions and absolutely love dogs.  Instagram: taylornkulp

 

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Why I Want To Hear The Word "Vascular" More Often

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Why I Want To Hear The Word "Vascular" More Often

I am twenty-one years old. I am a college graduate, I eat my vegetables, do my physio, and love animals. I am kind, funny, and compassionate. I am just like any other twenty-something with goals, dreams, hopes, and fears. Except, as anybody diagnosed with a serious and lifechanging illness understands, we are nothing like the average person in our age range.

I am only in my third decade of life with the crumbly joints of an elderly person. I have learnt how to self-relocate joints, how to wrap myself tight enough to hold my body together, how not to cry until I’m in the car after every awful appointment. It isn’t uncommon for me to get stuck in the bathtub, or to accidentally cut myself with the most mundane objects (seriously, the bristle end of a toothbrush?), and I have a nasty habit of fainting and concussing myself. With all my years on this planet, and these experiences, I thought I understood fear.

Exactly two months ago was the day when everything really started going downhill. Most of November 8th is a blur for my family and I. The visit to the hospital started off well, having my poor, broken body prodded, and manipulated into positions only faulty connective tissue can manufacture. My Beighton scale and Brighton criteria were positive, my doctor’s jaw dropped when she watched me dislocate my shoulder with zero pressure involved. As the testing continued, we began to relax – breathing became a little easier as we had realised that we were FINALLY being taken seriously. Unfortunately, the experience didn’t stay this positive. We were instructed to take a seat, so we could discuss the doctor’s ideas and opinions surrounding the question of me having Ehlers-Danlos.

The word just fell out of her mouth, no empathy or feeling involved, as she stared at me. Vascular. . Forty-eight. Forty-eight is the average lifespan for a Vascular Ehlers-Danlos Syndrome (EDS) patient. That’s 27 years left, if I follow behavioural trends in the same way I do in other areas of my life. Sure, I was hypermobile, but I also showed signs of significant vascular involvement. I couldn’t speak, or think. Hell, at this point, I could barely contain the contents of my stomach (slow digestion problems, anyone?). After years of extensive research into the possible causes of my failing body, we had never considered vascular issues. The more I thought about it, the more features of Vascular EDS I could see in my mother. My best-friend, my hero, and my biggest advocate. It’s a whole other world of pain when you can recognise aspects of a deadly disease in someone you adore and would do anything to protect.

Luckily, it has been two months of healing. During this period, we both have undertaken more research than I thought possible. We have cried, dealt with grief and anger. But most of all, we have clung to each other, offering support in a way nobody else could provide. Being diagnosed with such a taxing condition is life altering, your world is turned upside down with a single sentence.

If you’re going through the diagnostic process, for any illness, I want you to know you’re allowed to cope with your new reality in any way that is healthy for you. You get to be a little bit selfish, and you’re allowed to take as much time as you need to process what’s happening. You’re allowed to cry as much as you need to, but you’re not allowed to give up. Take it one day at a time, and just keep breathing, even if you feel like you can’t anymore. Better days are on the horizon, even if the improvement comes from your mentality towards your new label rather than physical improvements. Realistically, it won’t get easier straight away, but I promise it does start to hurt a little less over time. I found that the more we understood what was going on, and the more prepared we were, the easier it became! Chronic illness warriors are the bravest people I’ve had the privilege of meeting, be it in real life or through the interwebs. I have zero doubt that you can do it.  

To my vascular babes especially, my inbox is ALWAYS open for anything you need. I know how terrifying and lonely it is, when all the information about EDS focusses on types 1-3. Vascular Ehlers-Danlos is chronically underrepresented, but together we’re going to change this! We are the pioneers of better medical treatments, we are the patients that will improve quality of life for the patients of the future, and together we can change the way EDS is represented and diagnosed. Personally, I view this as the biggest blessing of all. Not every person has the capacity to cope with hardships like we do, we are warriors.  

The Spotlight Post was written by Alice, a post-graduate linguistics student from New Zealand fighting Ehlers-Danlos syndrome, collecting comorbidities since 2010. Follow her and Contact through Instagram: @vascular.vibes

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How to Save a Life (Suicide Prevention Day)

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How to Save a Life (Suicide Prevention Day)

This Spotlight post is written by Christine Toupin

September 10, 2016 is World Suicide Prevention Day. It's been just over 30 weeks now since I attempted suicide, so this particular day has significant meaning to me. I didn't know about World Suicide Prevention Day until recently, and I think it's a great concept. But I do have one problem with it. Every day should be a suicide prevention day.

February 3, 2016. When I called 911 twice telling them that I was suicidal. That should've been a suicide prevention day. They should've taken me seriously. They should've responded in a manner equivalent to the intensity of the situation, and they didn't. Instead, they came to my house and told me that I was fine. That night I took an overdose that was intended to kill me. I wasn't fine. I wasn't just an overdramatic, rebellious, attention seeking teenager. I was hurting. I was unsafe. I was crying out for help desperately. But that wasn't a suicide prevention day. I almost died that day. That day should've been a suicide prevention day.

Everyone has their own set of coping skills and they look different in every single person. Granted, some are far healthier than others, and some coping skills aren't healthy or safe and that's important to address. But coping skills are still coping skills and sometimes they're the only things that keep people going. So before judging someone's coping skills or blaming them, it should be considered that perhaps they're at a point where those coping skills are the only things that they have left. Maybe they need more support instead of judgment. Maybe they feel hopeless. Maybe they need help. Maybe before you take away the only thing they have left you should give them some support. Every day should be a suicide prevention day.

So how do we make things different? How do we take steps to prevent suicide, not just on one day a year, but every day?

Listen to people. Make sure people know that you're there for them. Respond with support and kindness and without judgement or condemnation. You might be the only person with whom they ever share how they're feeling. When someone trusts you enough to tell you something serious, always take it seriously.

Ask questions instead of making assumptions. Don't assume that depression is the same for everyone because it isn't. Don't assume that someone is fine just because they're smiling. Ask them "How are you doing today?". See what they say. Maybe they're doing great. Maybe they aren't. But you can't know if you don't ask.

Reach out regularly. Instead of making a ton of effort one day to tell the world "If you need help, I'm here!", make it clear to people in the little things that you do every day. When you know that someone is having a hard time, ask them how you can help. From time to time, if you want to make that Facebook post or whatever saying that you're there for everyone, go right ahead, any day that you'd like. Reach out anytime you find it appropriate, not just once a year because everyone else is doing it. Go with that gut feeling. Reach out to people who are hurting. You just might save a life.

If you're hurting, get help. There are people who want you to keep living. You are worth something in this world. Ask for help. Make today your suicide prevention day.

Take steps to prevent suicide. September 10. February 3. Today. Tomorrow. Every day. Because every day should be a suicide prevention day.

 

Note: If you or anyone you know is feeling suicidal or struggling with depression, please reach out. You are not alone. You are important. You are loved. Christine, the author of this Spotlight piece, is currently in the hospital as I'm publishing this, so let's all send her some love and support. xo S

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Girl In Purple

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Girl In Purple

I don’t know where to begin or what to say. First off, I am Elizabeth Milstead, the founder and CEO of Girls in Purple Company. I started the company when I was fourteen years old in hopes to raise awareness for other chronic illness fighters across the world. When I was fourteen, because of the pains I had in my hands, I could barely write or function with them. In an attempt to help others and make my hands grow stronger, I started to make my own jewelry and sell it. Soon Girls in Purple blossomed and has grown over the past year or so in so many ways. My company isn’t just a jewelry company. It is a community of chronic illness fighters and human beings fighting through the daily struggles life throws at us. The motto of Girls in Purple is “Life is a beautiful gift” which is so true!! If anything I’ve learned from chronic illness is that to never take ANYTHING for granted and to always be thankful for the good and bad days. Girls in Purple now has a team of 5+ interns, 35,000 + followers on Instagram, and a community of chronic illness fighters that unite through the darkest times in life. We should never be alone in this fight because WE MATTER. We matter and have a purpose. I know it’s tough. I know it isn’t easy but if we unite together we can beat our chronic illnesses once and for all.

I am technically an undiagnosed chronic illness fighter. Doctors say I will never know what my illness is because I’ve been sick for so long. I have been sick for almost three years now and am the age sixteen almost seventeen. Doctors know though that I struggle with chronic pain and fatigue which is why I advocate both of those in my business. After these path couple months of debilitating struggle, I came to the realization one morning I wanted more. I wanted to raise even more awareness and felt as if I was being called by God to make a difference. I am so happy to share with all of you that my business Girls in Purple is expanding into a print magazine. I am absolutely in awe over all the support I’ve gotten and cannot wait for this print magazine to come out. YOUR story matters so share it. Help make a difference with me. If we join hands together, we can beat our chronic illnesses. We can beat the pain and suffering we go through every day. There is light at the end of the tunnel my friends, I believe it and so should you. Help me create something beautiful. I am blessed to have Shira from Sick Chicks helping me spread awareness. She is going to share her story and her organization in the first issue of the magazine. Don’t hesitate to reach out to me to be apart of this. Don’t hesitate to share your story because your story deserves to be told. You deserve everything loves. You really do.

I love you fellow spoonies and chronic illness fighters from the bottom of my heart.

xx, Elizabeth Milstead, @elizabethmilstead on Instagram 

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#CuresNow by the People, for the People

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#CuresNow by the People, for the People

This Spotlight post was written by Lisa Schill of The RASopathies Network

In those first few moments of his life, I knew something was wrong. I only had a moment to touch him before he was whisked away to the NICU. After a year and a half, we finally had a diagnosis. A RASopathy called Noonan Syndrome. No treatment. No cure.

I am a mother. My main goal in life is to make sure my children are healthy and happy. But what if you can’t keep them healthy? What if you don’t have the band-aids to fix their boo-boos? You dedicate your life to finding them.

Max working on finding cures

Max working on finding cures

21st Century Cures was written by the people, for the people. It is legislation that will help reform the process of drug development by delivering treatments and cures to more families, safely and efficiently. An innovative bipartisan bill that was created after a year of discussions with patients, caregivers, researchers, physicians, and industry - ALL the stakeholders. Everyone in America had the opportunity to share their thoughts, feelings and concerns regarding how to ensure more treatments and cures could make it to the people who need them the most. One of the finest examples of our democratic process at work. It passed the Energy and Commerce Committee unanimously and passed the House by an overwhelming majority.

What does the bill include? It includes more funding for the NIH and FDA, which is desperately needed. It encourages that the patient perspective is at the core of all aspects of the drug development process. The cherry on top – the OPEN ACT. The OPEN ACT was included in the House version of the bill, but separated in the Senate version. The OPEN ACT has the potential to double the number of treatments for rare disease patients.

Just as our forefathers fought for democracy on the Freedom Trail, we are fighting for the health of every American. Everyone will eventually be a patient one day.

When your time comes, are you going to want more and better band-aids in the medicine cabinet?

Senate, we are calling on you to answer the needs of your constituents. The time is NOW for #CuresNOW. Every day, week, or month we wait to pass 21st Century Cures and the OPEN ACT are precious moments lost. Moments celebrating babies first steps, another candle in a cake, or a kiss confirming vows. Moments that should not be taken for granted.

Senate, please help us pass 21st Century Cures and the OPEN ACT today. The longer we wait, the more lives we lose. This legislation is an opportunity to create meaningful change for people that we all know and love. Make it a point to make a difference in their lives and many others with a yes vote when the Cures and OPEN bills come to the floor in September. We need your support. #CuresNOW

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Finding Myself Advocating for #CuresNow - Sharon Nissley

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Finding Myself Advocating for #CuresNow - Sharon Nissley

This Spotlight Post is written by Sharon Nissley - founder of KFS Freedom - and was originally posted on The Mighty

Rare disease has changed my life in many ways, but the most unexpected recent change has been my interest in laws and political issues regarding health care and treatment options.

You see, I am a right brainer.  I enjoy and flourish in the arts. I've never jumped for joy while taking a math or science class. I can recall looking up medical terminology after diagnosis's, and subsequent MRI or test reports years ago, and how strange learning about medicine was for me. I was in a new arena and out of my comfort zone. However,  I realized that in order to advocate for my care, it was a necessary step, and I was finding it interesting! I was being forced to expand in ways I had never imagined. Being creative had always been my focus whether in study, or for fun.  But more recently, as a patient and advocate,  I've experienced another surprising shift in interests.

Why, you ask?  Because for the past 6+ years I've been relentlessly and urgently seeking treatments as a patient, for the following rare diseases: Klippel-Feil syndrome, Cervical Dystonia, Ehlers-Danlos syndrome, and Vasculitis.  Time and time again, I have found little understanding or relief.  I've traveled to 5 states seeking care.  Yes, there are a few great doctors out there. Great doctors who have limited time, limited accurate information, and limited treatment and medication options to offer me as a patient dealing with such an odd laundry list of rare conditions.

I've been at a personal stand-still regarding my care for well over a year.  After putting down the paint brushes to focus on MRI reports and the like, I have come to a dead end regarding what might help the chronic debilitating pain and muscle spasms that send a constant911 signal throughout my body. I know I am not alone in this - care options for those with rare conditions are extremely limited. Complaining about it, and doing nothing will get us nowhere.  However, for myself and others in the rare disease community and beyond, there is something we can do to help ourselves! 

You see, there is a bill, the 21st Century Cures Act H.R. 6,  that is critical for the improvement of care for Americans as a whole, but namely for rare disease patients who are so in need. In July 2015 the bill passed the House. This fall, when summer recess ends, we need the Senate to pass this bill, for it to move forward. This bill needs to be implemented and we are running out of time!  

I've been preparing to meet with my legislatures personally, to urge them to help pass this bill now. Gulp. I'm completely out of my comfort zone! 

The idea of walking into a government office makes me so nervous, but so does a future without proper health care for the conditions I face daily. 

I've literally had to brush up on how a bill becomes a law, think "I'm Just a Bill"  style!  Just like I had with every unknown medical term on MRI reports, I've looked up some unknown government and political terms, to understand the process.  After learning more about this bill, which includes the Open Act HR 971/S 1421,  and funding for the NIH and FDA, we can't let this valuable path to cures pass us by!  Dare I say, I am passionate about the importance of supporting this bill - right now!  

The 21st Century Cures Act will expand treatment options for all of us, not just those who have a rare disease.  I am asking you to please join myself and others. Send your Senators and Representatives an email. Hop on twitter and tweet to Congress using hashtags like #CuresNow, #OPENact, and #Path2Cures! Not sure who your federal representatives are? Click here. Speak up, call, write, or set up a meeting, because it really is up to us, and we cannot afford to wait. 

Of the 7000 rare diseases, that affect 30 million Americans, only 5% of rare diseases have an FDA approved treatment. The 21st Century Cures Act  has been developed to help us, but it needs our support now! Heck, if I can, you can!  Not to mention, new treatment options would allow me to feel well enough to get back to other passions!   Together we are powerful.   

You can follow Sharon through her organization Klieppel Feil Syndrome Freedom and on her personal Twitter

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We Need #CuresNow and #OPENAct - Kylene Boka

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We Need #CuresNow and #OPENAct - Kylene Boka

I usually do my best to stay out of politics, but every so often something comes up that I can't let go by. And right now, one of those somethings is makings its ways through Congress. The 21st Century Cures Act has been passed by the House and will up for consideration in the Senate in September. This has the potential to be a game-changer when it comes to health legislation.

 

The 21st Century Cures Act will put into practice new legislation and infrastructure to continue funding medical research focused on discovering treatments and cures. Institutes, such as the National Institutes of Health, that are dedicated to being on the forefront of research and medical advancement cannot function without funding. This act will help guarantee funding for these research facilities that place a huge role in why the USA is where the world comes for treatment. This act does not specifically fund rare disease research, but provides general funding for healthcare and biomedical science to guarantee the resources needed for researchers to continue making advances in this field and discovering new breakthroughs.

 

Is there anyone who hasn't known someone with cancer? What about Alzheimer's or Parkinson's or diabetes? The 21st Century Cures Act even addresses new issues, such as the Zika virus, to provide funding that allows researchers to stay at the forefront of what is happening in the medical field and to keep working to find better treatments, and eventually cures. Health can change so quickly...this might not seem like it is relevant for you today, but I can tell you that I never expected it to matter to me either. In 2, 5, 10 years when someone you know is facing a tough diagnosis, you will want to know that you have hope for treatment and maybe even a cure thanks to the 21st Century Cures Act.

So I hope you see why this is important. But for me, it goes one step further.

The OPEN Act is also up for consideration. This specifically targets rare diseases and the ways they are treated and managed. This act provides incentives to large pharmaceutical companies to allow for off-label use of currently on-label medications to treat rare diseases with no currently approved treatment options. 

In English, that means that patients living with a rare disease that has no FDA approved treatments, may get approval to use medications already on the market for other conditions. Many times medications that are FDA approved for certain issues can also work for other conditions even if they are not specifically approved for them. 

It may seem complicated, and again, not relevant, but remember that 1 in 10 Americans are living with a rare disease. You probably know more people than you think who are living with one of 7000 identified rare diseases. Out of these, 95% have ZERO FDA approved treatment options. Mast cell disease is a part of that 95%.

Yes, there are medications that we can take to manage symptoms. HOWEVER, because nothing is specifically FDA approved for mast cell disease it can either be incredibly expensive because it is denied by insurance (which usually means it isn't really an option because what rare disease patient has thousands of dollars just lying around) or if it does happen to get approved, it takes months/years to get that approval. In the mean time, we're left trying to figure things out for ourselves and wondering how much long until we're out of options. 

The OPEN Act would give rare disease patients another lifeline when nothing is working. Instead of being told that the only available options have been exhausted and there is nothing left, there is at least the hope that maybe there is still something that could help. It might not provide cures, but it at least gives the potential of treatment to give more time until cures are found. 

I am thankful that right now in the treatment of my mast cell disease, we still have things to try. We are making progress with the Xolair (which took 5 months to get approval) and getting better at tweaking my medications to continue improving my symptoms. But it's not perfect, and there are days when I feel like nothing is working...and I wonder what could happen if I were to get to the end of what is currently available. I have friends who are there now. 

Friends who are faced with the choice of anaphylaxis from IV nutrition or anaphylaxis from tube feeds...Friends who react to the only medications available to manage their symptoms because they have been stuck waiting for insurance approvals for 7 months...Friends unable to get any treatments beyond over the counter medications because insurance won't approve anything for a condition they don't have codes for...and billing codes for mast cell diseases won't be available until October 2016...

It's crunch time. Not just for those of us with rare diseases waiting for access to treatments and insurance approvals. It's crunch time for the 21st Century Cures Act and the OPEN Act. Please help raise awareness for the need for medical research to benefit all healthcare as well as provisions to allow additional options for rare disease patients. We have the month of August to get the word out. 

We need #CuresNow! The #OPENAct matters because we understand that medical advances don't happen overnight and finding a cure doesn't mean anything if the patients who need it can't get treatment now.

 

 

This Spotlight post was written by Kylene Boka and originally posted on "Maintenance Required" 

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Why I Support #CuresNow - Stephanie Fischer

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Why I Support #CuresNow - Stephanie Fischer

When I was 29 and seemingly healthy, I had a stroke caused by a rare disease I hadn't known I had. I was fortunate to fully recover after a few weeks of physical therapy and months of speech therapy. I've taken several different blood thinners off-label to prevent another stroke.

I support the 21st Century Cures initiative because it would be truly transformative to our biomedical enterprise. U.S. regulations have not kept up with scientific advances, and change is desperately needed to accelerate the discovery, development and delivery of new treatments to patients.

The House Energy and Commerce Committee spent more than a year soliciting feedback from researchers, patients, physicians, leaders of the Food and Drug Administration (FDA) and National Institutes of Health (NIH), and other stakeholders to identify what improvements to the research and development ecosystem could have the greatest impact for patients. The legislation was considered by the Committee and then received broad bipartisan support when it passed the U.S. House of Representatives by a vote of 344-77 last July. 

Despite this widespread support in the House, and by the more than 700 advocacy organizations that signed on to support 21st Century Cures, the U.S. Senate has not yet voted on the bill.

Time for Congress to act is running out. And time is running out for patients who need new treatments. Please call your Senators to urge them to support #CuresNow and the OPEN ACT (HR 971/ S 1421), which would provide an incentive to encourage biopharmaceutical companies to repurpose medicines for rare diseases (resulting in more FDA-approved treatments for patients).

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InvisiYouth

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InvisiYouth

I often get asked, “How did you come up with InvisiYouth? The idea of helping teenagers in pediatric hospitals—while needed—is so specific so, how did you think of it?”  The answer to it is simple, when I was a teenager, I used to be one of these teens dealing with chronic illness in pediatric settings.  Way back when I was a 15 years old, with a typical teenage invincible attitude, I spent all of my time either on the tennis court or in the library writing my latest short story. For over eight years, I was a competitive tennis player and used every opportunity I had to practice more and more, no matter how sore my body might have been.  At one early morning practice, my life would change forever.

While doing some basic ground strokes with my coach, I kept feeling this burning pain throbbing into my left dominant hand and when I tried to switch my grip to alleviate the soreness, I made one wrong hit, my thumb popped and immediate bone-crushing pain ensued. Flash forward a week, and my hand looked anything but normal.

Swollen four times the size and bruised to the deepest shade of blue, my hand looked horrendous but, the pain was even worse.  To put it briefly, it felt like I was being whipped with barbed wire while being lit on fire within the confines of my hand.  None of my doctors knew what was happening and finally one pediatric orthopedic said I might have Reflex Sympathetic Dystrophy (RSD).  In a nutshell, RSD is a neurovascular condition that results from an injury to your nervous system. Pain from an original injury gets damaged and changes into an abnormal neurovascular condition which causes a cycle of intense pain and injury to the affected area; your body is continuing to respond to an injury that does not exist any longer. 

For the next two years I was referred to countless doctors, from rheumatologists to cardiologists, neurologists and hematologists but no one could treat my condition correctly. They would all say that I definitely had RSD but my symptoms were so abnormal and unresponsive to physical therapy (the only known-successful form of treatment) so they believed something else had to be medically-wrong.  That reason alone led me on the wild goose chase for an answer.  Growing through my teen years with this health problem, all teenage drama tends to be heightened, obstacles are less about the latest social media trends or hallway gossip and more about when your next physical therapy session was or which doctors appointment I had to schedule between class, which often meant missing school, clubs, and seeing my friends.

My life seemed to be going along parallel to my friends, both moving in the same direction, but taking two completely different paths that never intersected.  While my friends were planning their lavish Sweet 16 parties, I was lying on a hospital bed having an unsuccessful nerve block. And while I was spending my summer in recovery from my spinal correction and fusion surgery, they were off visiting colleges or lounging at the pool. Needless to say, life was different for me, and it would take years before any treatment would pay off.  The entire second half of my teens was spent dedicated to my health condition and trying to resolve the problem that at times, felt like no one had the exact answer.

Sure, when people see me now, they see a normal, healthy young woman in her twenties but, they really don’t understand that underneath it all, they are missing a big part of my past that makes me who I am.  A part from my teens when the notion of “healthy” and “normal” were never even considered as verbs to describe me.  And while yes, I still deal with residual RSD and perpetually feel bruised on the left side of my body with the occasional flare-ups thanks to cold weather or the unfortunate stumble with my left limbs, it has become my new normal.  I don’t need people to pity any part of my life because I am so grateful for every day that I have, good or not.  Dealing with a chronic illness in my past has opened my eyes to being beyond grateful and happy about life, to find the humor in even the worse situations, and to live my life the way I dream for it to be. 

It was almost three years ago when I first came up with the idea of InvisiYouth Charity.  I had spent so much of my teen years in over 31 pediatric doctors’ offices, facilities and hospitals but the one singular trait through majority of them was that as a teen, I never felt represented.  More that I was misrepresented in every way as a teenager in pediatrics. Either doctors treated me like an adult and ignored my parents, barely explaining anything in a way I could understand, or I was treated like a child where the doctor would only talk to my parents as if I wasn’t in the room.  I was surrounded with pain charts that had smiley faces (which I needed to point to when asked my pain level—usually it was the face with the sad expression and one tear coming from its eye).  Or I would need to listen to jokes and put on hospital gowns with teddy bears or circus animals, nothing ever appealing to my growing fashion sense that would have made me a little more comfortable in the situation.  Nothing about my pediatric experience allowed me to feel like a teenager but rather, I felt like I was caught in this gap, this invisible section of pediatric settings, that didn’t exactly know what to do with my teenager mentality and lifestyle. 

This feeling of never having a voice in my health began to set a fire inside me, a passion to make a change to this community. And it wasn’t just me…constantly I was hearing from other teens who were still going to their pediatric doctors or had chronic health conditions making the same claim: Why is there no place for teenagers in pediatrics? How can we learn to deal with pediatrics as a teen, and for clinicians to learn how to interact with us? Where is our voice?

That is why InvisiYouth Charity was born.  Teens are a unique group and they need to be helped as such.  That’s what InvisiYouth is all about—Helping teens in pediatrics find their own voice.

 

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