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