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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.

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