This Doctor with Tuberous Sclerosis is Also a Patient in Need of a Kidney

Approximately one million people worldwide have been diagnosed with tuberous sclerosis complex (TSC), a condition where non-cancerous tumors and other lesions grow most commonly in the kidneys, heart, lungs, skin and brain.

Depending upon where the tumors or lesions develop, tuberous sclerosis complex can range from mild and manageable, to severe. For some patients, symptoms are obvious from birth, yet others may have already reached adulthood by the time of diagnosis.

When the skin is affected, acne-like lesions appear, and light colored patches can become apparent. This is a very treatable form of tuberous sclerosis. With brain lesions, the story is very different. The onset of seizures, called infantile spasms, can completely disrupt a child’s life. The child will have repetitive spasms of the head and legs. Tuberous sclerosis can also impact intellectual development, and cause behavioral issues. Most people with this rare condition will experience kidney problems at one point.

A doctor in Florida knows all too well about kidney problems. Dr. Stuart Himmelstein is currently on the kidney transplant list because his kidneys have failed because of tuberous sclerosis. Knowing that the average wait for a kidney is seven years, Himmelstein reached out via social media.

He created a Facebook page in an effort to identify a donor. This is not as outlandish as one might think. He has already been contacted by several people who were willing to donate a kidney to him, but unfortunately, none were appropriate matches. Still, Himmelstein is hopeful that the “circle of kindness” will eventually come through for him.

Would you donate your Type O kidney to Dr. Stuart Himmelstein? If so, contact the Mayo Clinic here or call them at 866-227-1569.


Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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