Shira Strongin: A Voice For Those With Rare Diseases

Sporting turquoise hair and her own unique style, Shira Strongin is a vibrant and creative teenage girl. She grew up singing and dancing, and was actively involved in musical theater. In her pre-teen years, she suffered a dance injury that would ultimately change her life. Her parents took her to the doctor for the injury, but there were other issues. This began a long journey to find the correct diagnosis.

Read Shira’s Blog

Want to learn more about Shira? Check out her blog, The Sick Chicks.

Shira is also a writer, a trait that has come to define her since she was diagnosed with Ehlers-Danlos Syndrome and other rare diseases. Ehlers-Danlos patients have a genetic disposition to weakened body structures such as skin, bone, blood vessels, and organs that results in chronic pain, early arthritis, and even death. Shira describes her symptoms as “a Pain so Intense it rules your life…a million suns burning under your skin or feeling like a lightening bolt is being shot through your body 24/7.”

Shira and her family were at a loss long before they ever knew the name of her illness. They scoured the country for specialists who could help. They went to work trying to find a solution to Shira’s symptoms, which had become debilitating and prevented her from living a normal teenage life. She suffered from severe body pain and headaches, and her cognition had gotten so bad she couldn’t focus on homework and she missed a lot of school. Shira always believed she would graduate high school and go to college – but even this dream started to become less of a certainty.

Throughout her illness, Shira kept a blog to chronicle her journey. She wrote under the pen name Sick Chick, and soon started to grow a following of others who could relate to her. She met other young girls who suffered from chronic illness and bonded with them over the frustrating issues they dealt with on a day to day basis.

Through the community she built through her blog, Shira and her parents were told about Kenneth Liu, MD, a neurosurgeon at UVA Health System who was treating Ehler’s Danlos patients through a totally unique procedure.

Dr. Liu helped to discover that in some EDS patients like Shira, the veins in their brain had become clogged which resulted in pressure on the brain and ultimately symptoms such as pain, headaches, and cognitive issues. By placing a stent in a blood vessel, the blood flow is improved and the symptoms are alleviated.

Learn More

Learn more about Ehlers-Danlos Syndrome.

The Strongin’s traveled to UVA from their home in Southern California. The procedure was a success.

Throughout her journey, and with help from her online community she formed through her Sick Chicks Blog, Shira has become a voice for others with rare diseases. She has lobbied Congress for legislation on medication reform and even helped to pass The 21st Century Cares Act, which set aside over $6 billion in funding for “discovery, development, and delivery of 21st Century cures.”

Just over a year after the procedure, Shira’s mother, Barbara, wrote to Dr. Liu to thank him for taking care of her daughter. In the email, she went on to say that Shira has committed to George Washington University and will be going to college, a dream that will come true.

Watch her story.

Comments (16)

  1. Dawn Woodring says:

    Cardiovascular EDS is only one of several types of EDS. Hypermoblity EDS is much more common. My daughter was diagnosed at the Children’s Heart Institute with hEDS. https://ehlers-danlos.com/what-is-hsd/ Which doctor at UVA is addressing this type? Thank you.

  2. Margo Bennett says:

    Is there a varying percentages for Ellers Danlos, by that I mean mild to very significant? Then those with milder Ehlers-Danlos and a milder form of factor 11(36-40 test number are at with normal being 65-120?) Also with being over 26″ at birth to 6’6″ presently also a college athlete so more bruising would be expected & bruises more easily already. Would someone like this be at risk also??
    Marfans has been ruled out. There is 1st cousins on maternal side whose children have Ehlers-Danlos severely .

  3. Kair says:

    Dear UVA thank you for spreading awareness about some of the struggles those of us with Ehlers Danlos Sydromes face. New EDS diagnostic criteria was formally released last month (march 2017) – EDS now stands for Ehlers Danlos Syndromes (plural) We EDS patients we are so thankful for the medical facilities that continue to take the steps to educate their staff and stay up to date on research for rare diseases!

  4. Sharon says:

    Thank you. It took over 25 years for me
    To get an accurate diagnosis.

  5. Melissa says:

    My family has struggled with EDS for 60 years, 3 generations and nothing has ever been done, cuz there really isnt snything that can be done or taken or changed. So this is crazy to me, why haven’t doctors told us about this option? It’s amazing!!! Maybe there is hope!!!

  6. Pam says:

    What type of EDS does Shira have? This is important for us to know before thinking a treatment might work for us.

  7. Jessie says:

    My daughter was 11 diagnosed with EDS TYPE 3, FIBROMYALGIA, TMJS.

  8. Erica Gregory says:

    Since there have been so many questions about EDS and this treatment, Dr. Liu has graciously offered his email address in order for you to reach out to him directly. You can reach him at kenneth.c.liu@virginia.edu

  9. Jackie says:

    I am a 48 yr old woman who was diagnosed with EDS when I was about 25. I was also diagnosed with fibromyalgia about 2 yrs ago. I am in constant pain. My pain management Dr and rhuematologist have me on lots of meds that don’t really work. I would like to know if you have any suggestions on what I should do or where to go. I’m in physical therapy, I leave only to have my knees swollen to the point where I can’t bend them. Please help me. I’m at the end of my rope.

  10. Shannon says:

    What testing d I need to ask for please help me

  11. Shannon says:

    What test do I ask for

  12. Mari says:

    Shannon and Jackie, I am so sorry about this exhausting treatment journey you have been on. I pray that you will find answers and relief.
    It has been a long journey for us too.
    The mother of an EDS girl

  13. Amy S says:

    I have EDS 3 & 4, POTS, Fibro, OA, and so many other things wrong with me as a direct result of my EDS. This is by far one of the worst diseases a person could ever inherit. It has stolen my life! I cannot withstand anymore, and cannot walk or function properly because of it.
    I have several surgeries ahead of me, some of which include: bilateral foot and ankle reconstruction, a total AND a partial knee replacement, and multi-point spinal fusion to correct severely neglected scoliosis…just to name a few.
    I truly wish ALL Doctors would be required to learn about this disease, because of all of the symptoms and other anomalies it directly results in. I struggle daily with the loss of my “former self,” and wish that something would put a stop its progression.
    Some days I swear I am losing my mind, because EHLERS DANLOS has taken everything from me, and is threatening the well-being & happiness of my 14yo, as well. Please God, help!!!

  14. Dawn Woodring says:

    I am starting a support/information group for those with EDS using materials/guidelines from The Ehlers-Danlos Society: https://ehlers-danlos.com If you are interested, please contact me at dawn.woodring@gmail.com.

    I also reached out Dr. Liu asking for his advice on specialists at UVA who understand all forms of EDS. I hope to be able to bring answers to the first support group meeting.

    There is hope to those who posted and are struggling. My daughter is doing very well after getting a proper diagnosis and treatment. Hang in there!

  15. Sally says:

    My soon to be 14 yr old daughter is having her 5th surgery in 3 yrs… scoliosis correction at Shriners Hospital in Philadelphia June 5. We are in Richmond and would like to see the team at UVA. She was labeled as hypotonic (as am I) until a friend with EDS told us to look into it. My orthopedic surgeon took one look at her after a knee dislocation which he did the surgery to help mend the damage and showed me the characteristics she has of EDS. There’s a long story of how we got to this point. My concern is the chronic pain. Migraines run in the family and have started with her also. I want to be proactive and ahead of the situation as much as possible.

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