Rare Disease Report

Shira the Sick Chick Goes to College

SEPTEMBER 12, 2017
James Radke
While most high school graduates enter college to start their learning how the world works and how they fit into it – Shira Strongin is way ahead of them.
Strongin is an ambitious, independent, and smart rare disease patient, the founder of Sick Chicks, and a long time rare disease advocate. She has spent the past several years providing a voice and a platform for other young women with chronic conditions.

Her blog, Sick Chicks, has been a must-read for many in the rare disease community, and as she gained recognition and knowledge, she began to lobby Washington to promote legislations before Congress and the Senate.

For most of her teen years, Shira has been sick and left with a plethora of come-and-go symptoms. She is part of the undiagnosed rare disease community, and currently on chemotherapy and 2 high-dose blood thinners to stay relatively healthy. Like many people with a chronic condition, her symptoms are often hidden making it difficult for many to understand the constant discomfort and exhaustion that often fill her day.

At George Washington University she is, to no one’s surprise, majoring in political communications in the hopes of further empowering and uniting women with illnesses and disabilities.

But her new educational path does not mean Sick Chicks will suffer. Instead, the organization should prosper thanks to $36,000 grant Shira was recently awarded from the Diller Teen Tikkun Olam Awards.

Rare Disease Report spoke with Shira about the award and how she is handling her new campus life.

Rare Disease Report: What is The Diller Teen Tikkun Olam Award?

Shira Strongin: The Diller Teen Tikkun Olam Award awards empowered Jewish young adults who are creating projects to make this world a better place. Tikkun Olam is the Jewish idea of repairing and healing the world, and it's one of the fundamental values of Judaism. So it's really wonderful that they are promoting this in young people because so often, young people are forgotten in advocacy, charity, and other things.

I'm 1 of 15 recipients this year of the $36,000 award, and the money can go toward my projects or toward my education.  I have chosen to put it towards Sick Chicks because I was lucky enough to have a merit scholarship for college that made it much more affordable. And the money from the award is going towards making Sick Chicks an official 501-C-3 to make it an official nonprofit organization. Also, I hope to start a college scholarship fund for future Sick Chick students who can't get college scholarships as easily as healthy people.

RDR: How difficult has it been from high school to college as a rare disease patient?

Strongin: When I was home, everyone knew I was sick. That is not the case anymore. I’ve had to remember to explain to people here about my illness and because I am technically undiagnosed, it can be tricky. We have a couple of ideas why I have what I have but having to explain all these things that are wrong with me and that I don't know what's causing them and the whole invisible disability illness aspect of it takes time. But I have my wheelchair tucked under my bed and while I'm explaining that just because I'm not using it now doesn't mean that I won't ever have to use it. Right now, I am kind of getting people prepared for you know when sick season starts and I have to start wearing my mask. So it's definitely been interesting and the people have been so understanding and wonderful.

Also, one of the courses I'm taking this semester is called ‘cripplacology’ which is a disability studies course and it's really fascinating. I'm the only disabled person in the class but it it's very cool that it is specifically offered for freshman and I think it's a way that universities are trying to open eyes up to the diversity and what that means.  

So there's a lot of really great things going on at the campus for students with disabilities but I think with rare disease, it's going to always be a complicated subject because to be a rare disease you have to have under 200,000 diagnosed with the condition, and so most people when you say you have a rare disease they've never heard of anything that you could potentially have and people have a hard time believing what they don't know.

RDR: Do you think the transition from college to the work force will be more problematic?

Strongin: At my college, we have a separate career services for people with disabilities, so we're incredibly lucky to have that.  The job market is an entirely different place and I mean the accommodations that you get in high school and that you can get in college aren't things that you can really get in a workplace necessarily. You won’t get extended time if there's a deadline. At work, it's a deadline and you have to meet it. What is so powerful about George Washington University is that they have counselors that understand that and they can help us through that period so we don't get stuck falling through the cracks.  

I also think that there's a stereotype in the workplace about people with disabilities.  Companies don’t want to hire us disabled people because they think that we can't do the work or that we're going to miss so much time. Often it just means thinking of new, creative ways to accommodate us. If you're working for a newspaper and you can just as easily write your article from home as you can in the office.

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