Spotlight Story Program: Shira’s Story

Meet Shira Strongin

There is no joke around the statement that 18 year old Shira Strongin is an OG Sick Chick…in fact, she took her personal experiences growing up with chronic illnesses and built an entire international community surrounding the exact name, The Sick Chicks, all about empowering young women living with illness and disability.  When she’s not motivating others, Shira is motivating those law makers on Capital Hill in Washington DC, fighting hard to make changes that will positively impact the lives of so many youth with chronic illness in the USA.  And now she’ll be going to university in the country’s capital, so female illness empowerment is about to get a lot louder!  

“There’s no treatment. I’m sorry.”

Words no one wants to hear, but especially no child or teenager. But it’s the reality of living with many complex, life-threatening diseases. Growing up I knew I was sick, there was something off that doctors continued to miss, but it wasn’t until a spine injury that was a trigger event, that we realized how sick I was. It turns out I have a vascular subtype of Ehlers Danlos Syndrome and other rare comorbidities.

Instead of being in school or doing “typical teenage things” I’ve spent my adolescence in and out of the hospital fighting for my life. I soon realized how absolutely uncontrollable my health was, and decided to turn to advocacy as a way to take back control. I might not be able to change my immediate situation, but I sure as hell would make sure I impacted others’ situations and impacted future health care.

(*InvisiYouth Editing Note: This post was written in August while the fight for Cures Now was happening, a piece of legislation that has now been passed. And yet even currently so much is currently being discussed about healthcare in the United States, so keep on reading why Shira knows healthcare advocacy needs a youth voice!*)

Currently there is important legislation that is a revolution in healthcare that could completely change how complex, rare, and life threatening diseases are treated.

Instead of having to hear the phrase, “There’s no treatment. I’m sorry.” We could have access to previously off-label medication.

There will be research being done.

There is hope for us all, and because this is our future, we must take a stand.

“Congress is working together on a nonpartisan issue that will have a profound effect on the lives of all Americans. H.R. 6, the 21st Century Cures Act, will bring our health care innovation infrastructure into the 21st Century, delivering hope for patients and loved ones and providing necessary resources to researchers to continue their efforts to uncover the next generation of cures and treatments.” – Mission Statement, House Committee of Energy Commerce, 21st Century Cures

Is it just me or do you get chills reading that paragraph?

Finding advocacy allowed me take control of an uncontrollable situation (my health.) Now, one of the pieces of legislation I’m most passionate about and have fought the hardest for is facing it’s day in the Senate.

~ What do we want? Cures! When do we want them? Right. Freaking. Now. ~

We are in crunch time. 21st Century Cures has passed the House, and is now finally going to the Senate after being delayed quite a few times. August is our final time to push for this important piece of legislation. You might be asking things like, “Well, I’m not sick, so why does this affect me?” or, “I don’t have a rare disease, so why do I care?” I’m here to answer those questions.

Health legislation affects everyone. Yes, you might not be sick. Today. But health can change in the matter of seconds, and (God forbid) it ever happens to you, you’ll be hoping that 21st Century Cures in action to produce treatments and cures. Cures are for everyone NOT just rare disease patients. This affects cancer patients, this even affects the hot topic zika virus. But, OPEN Act (something I’m incredibly passionate about that gives bio pharmaceutical companies incentive to make off label medication on label for rare diseases that otherwise wouldn’t have treatments) is only for rare disease patients.

So then comes the question again, “Why should I care?” Because, 1 in 10 people have a rare disease. By that statistic everyone knows someone with a rare disease. So, get involved and care for your bother, your mom, your niece – whoever it may be because without these vital pieces of legislation they might me in the same situation as me…stuck living on borrowed time and who knows how long that lasts for?

For more information about Sick Chicks, the international community all about empowering young women with all types of chronic illnesses, visit their website, or go to their social media pages on Facebook, Twitter and Instagram

 

Spotlight Story Program: Katy’s Story

Meet Katy Baker

Since before she can remember, Katy has been part of the healthcare system dealing with a congenital heart defect called Scimitar Syndrome. But what has defined her medical life has not defined Katy’s personal life.  She’s a university student, on a competitive trampoline team, and rare disease activist that’s using her voice to make a positive difference.

At 3 months old, I was diagnosed with Scimitar Syndrome, a congenital heart defect which also means I only have one functioning lung.

Since then, I have had lots of tests, consultations and been under the care of different hospitals all which I continue to go all through this today.

As I became a young adult in the hospital system, I have now moved to a different hospital, had a new consultant and had more emergency hospital visits which meant needing more tests and observations.

I first moved to a different hospital when I transitioned from pediatric to adult hospital services. I had to get used to knowing my way round a new hospital, the new tests I had to do and get to know my new doctors. And my health still correlated with my life as a young person. 

When I moved to University, this meant signing up to a new general physician surgery where they did not know what my condition was, and even experience going to the emergency room in a hospital I did not know.

From my perspective, being a child or teen in pediatric medical care means that you normally have the same hospital consultant over the period of about 16 or 17 years, or whenever you transition to adult services.

In pediatrics, you are used to the same environment and over time you feel settled, not because you’re in a hospital but because it’s somewhere you’ve got to know and somewhere you know you’re going to be cared for. Being a teen in pediatric medical care is unique because you still have the support from your family and there is no pressure when it comes to whether they are there for your appointments or not. Teenagers who are chronically ill often have to grow up more quickly to understand everything that is going on but they are still children and still need support from others.

Being a teen patient to me is different than being a child patient or an adult patient because as a teenager, you are exposed to a lot more in your life but at the same time, you are going through some other transitions which teenagers can often find difficult.

However, when you’re a child, you are often more dependent on your family and they might not be aware what is going on which in a way is an advantage because as a teenager, you often have more awareness of what you are going through and your illness which can be really difficult not only for your physical but also mental health.

Having to be in hospital as a teenager can be really difficult because of everything else you are going through at the same time in your life outside of your health. But I think that one of the most important things to do is ask for support when you need. Whether the support is a family member, a friend or someone else, having support while in hospital or with a chronic illness can often be useful.

I think teenagers in hospital would benefit from introductions and more information earlier about the transition process into adult health services. Young people often move to adult services when they are from between 14-18 years old and so new environments can seem quite overwhelming. Therefore, introductions and information about the adult services should be in place.

Dealing with my health has been really challenging, however there have also been some benefits because it has shaped me in to who I am today. I created a film last year with a charity about how my condition does not stop me from being part of my University’s trampolining team. Since then, I was in two newspapers, on a local radio station and now being given lots of opportunities to spread my story. I was even invited to speak at a Rare Disease Day event this year, which was such a great experience.

I am also really excited to participate in the Superhero Series disability adaptive sport event this August in England as part of InvisiYouth’s Charity Friends team to show that people with disabilities or illnesses can still achieve like everyone else.

Dealing with my health has taught me to not take life for granted and to take every opportunity that comes my way. 

In the future, I want to complete my Childhood and Youth degree, do a master’s degree and have a career working with children and young people in a hospital.

For me, it’s as if my life will be going full circle from my personal experiences and professional future.

Spotlight Story Program: Brittany’s Story

Meet Brittany Foster

Her heart may have given Brittany Foster lots of medical struggles throughout her life, but she has one of the kindest and passionate hearts out there. Brittany has used her experiences through pediatrics into adult healthcare to give back, to inspire others to take control of their health journey and become their own medical advocates.

From birth to 24 years old I have been diagnosed with quite a few conditions. Some chronic, others have been able to be “fixed” or “treated” with surgery.

At birth I was born a “blue baby” and would later be diagnosed with pulmonary hypertension, right aortic arch, and a large VSD. These conditions have later led to having a thoracic bypass surgery due to anomalies related to the right aortic arch, atrial tachycardia, congenital sinus node disease, sinus pauses, bifascicular bundle branch blocks, and a permanent pacemaker implant.

My other conditions I faced as a child were a surgical repair for currarino triad syndrome which is a sacral teratoma. Throughout my teen and early adulthood, this has left me with chronic bladder control problems, and chronic lower back pain. An intestinal surgery I had for a blockage as a newborn later affected my late teen years due to scarring of the fallopian tubes. This led me to have both fallopian tubes removed at 18 years old as well as one of my ovaries removed at 21 due to endometriosis and large cysts.

Continue reading Spotlight Story Program: Brittany’s Story

Spotlight Story Program: Rachel’s Story

Meet Rachel Necky

As a rockstar athlete, teen Rachel Necky was ruling her life as an ice hockey player, but one injury would change her life direction. Dealing with the neurovascular condition called CRPS, Complex Regional Pain Syndrome, Rachel had to dig deep, find even more strength, and use her dedicated athlete mentality to fight back against her condition and realize that she could push herself and conquer all.

My name is Rachel Necky and this is my story: When I was little, I always noticed that simple things such as someone poking my arm and tickling me caused me pain. I didn’t understand it and didn’t really think much into it. In 2012, I fractured my fibula playing kickball in gym class. I went to the first orthopedist I could get an appointment with. They initially gave me a walking boot.

Unfortunately, that didn’t help because it was pushing on a very sensitive spot on the side of my leg–I call it my soft spot.

So, the doctor decided to take it off before I was fully healed, and they didn’t have me go to physical therapy. Once the boot was off, I started having very extreme, intense pain on my soft spot. The pain progressed and bounced over to the same spot on my other leg and continued switching back and forth. I went to another orthopedist and they told me I had shin splints.

The pain began to spread until it covered every inch of my body.

Continue reading Spotlight Story Program: Rachel’s Story

Spotlight Story Program: Erin’s Story

Meet Erin Raftery

Since before Erin Raftery could even talk, she was dealing with problems in her health. From a battle with leukemia to cardiac conditions, Erin has had to adapt her lifestyle to her health, and that made Erin a stronger and more accomplished young adult than her wildest dreams.

Yes, I spent a lot of my teenage years in outpatient care at pediatric hospitals.

When I was eighteen months old, I was diagnosed with leukemia and received chemotherapy until I was three years old. The chemotherapy caused me to have several after effects. The first was diagnosed while I was still receiving chemo, and that would be Cardiomyopathy.When I was ten years old, I was diagnosed with epilepsy. When I was a sophomore in high school, my heart condition worsened and turned into a condition called Dilated Restrictive Cardiomyopathy.  Also in high school, I was diagnosed with asthma. And lastly, when I was sixteen years old, I was diagnosed with primary ovarian failure.

Continue reading Spotlight Story Program: Erin’s Story

Spotlight Story Program: Emily’s Story

Meet Emily Levy

After years of mysterious illness symptoms and suffering, Emily Levy was finally given a diagnosis of neurological Lyme disease, but that did not stop Emily for achieving her dreams.  Now as a successful boss lady and creator of the company Mighty-Well, Emily has decided to take her experience and give back to others in the invisible illness community.

My name is Emily Levy and I am the CEO and Co-Founder of Mighty Well. We create stylish and functional medical accessories.

I am a graduate from Babson College and I have severe chronic neurological Lyme disease. I first got sick in 7th grade, but because I never had a “bulls eye” rash, doctors misdiagnosed me with acute mono.

Over the next seven years, ten different doctors misdiagnosed me.

Continue reading Spotlight Story Program: Emily’s Story

InvisiYouth Spotlight Story Program

Teens and young adults with chronic illness often fall into the gap between pediatric and adult healthcare, but not with InvisiYouth Charity! We created the InvisiYouth Spotlight Story Program to provide a platform for young people to share their health stories, advice and goals on their own terms. These are the empowering true lives of genuine healthcare warriors, the youth patients InvisiYouth loves. While we highlight one at a time, our Spotlight Archive has all our former Spotlight Story writers.

Check out our categories in the sidebar and click Spotlight Story Program for our latest Spotlight writer, or click Spotlight Story Archives to catch up on all the young adults that have shared their stories with us.

If you want to share your medical story, or know someone who should have their voice heard, email our founder, Dominique at dominique@invisiyouthcharity.com!  We want to hear from you!

Spotlight Story Program: Caroline’s Story

Meet Caroline Wallendal

Life as a teenager is challenging and complicated for anyone.  Add on top of that a life-threatening and changing illness like Cystic Fibrosis, and it is clear that every day brings its own unique experiences. Caroline Wallendal has not let her illness slow her down, in fact, she has used her experiences to strengthen her in all her achievements.

Even if I may look like a normal 16-year-old girl, there’s a lot more to me that most people don’t usually see. When I was just three months old, I was diagnosed with cystic fibrosis (CF). CF is defined as a genetic disorder mainly affecting the lungs and digestive system, but most definitions can’t describe the impact that it can take on one’s life. When I was younger, I did get sick and have some days that I felt like I just had to stay in bed, but I have been fortunate that I don’t have long stays in the hospital as often as some patients do. Even though I didn’t get super sick too often, I still had many challenges and I wouldn’t consider myself as having a “normal” childhood. I always had to take extra precautions in school and I couldn’t participate in all activities like everybody else because of my health.

Continue reading Spotlight Story Program: Caroline’s Story