The Spirit of Togetherness

Dr. Chris Scott’s Connecting the FOP Community in Africa

Dr. Chris Scott is pictured far left along with FOP patients Thozi Mciki (50 years old), Damian Hendricks (16 years old), Anesipho Stemela (13 years old), and Kaylin Mlenze (9 years old). Also pictured is Thozi's caregiver.

Professor Chris Scott is the head of the Rheumatology Department in Pediatrics and Child Health at Cape Town University in South Africa. He had spent much of his career in service to children with arthritis, lupus and other diseases affecting joints. It wasn’t until 2010 that he encountered his first case of FOP when he diagnosed a young girl who came through their medical facility. 

Dr. Scott’s facility has now diagnosed 12 more cases and he has developed a strong interest in advocating and fundraising for FOP patients in Africa and South Africa. He has served on the IFOPA International Presidents Council since 2011, and also sits on the International Clinical Council on FOP. Dr. Scott arranges all the FOP family get-togethers in South Africa. 

Recently, Dr. Scott was presented with an opportunity for a gathering he could not pass up when Dr. Zvi Grunwald of Thomas Jefferson University Hospital in Philadelphia, Penn. informed him of travel plans to South Africa. Dr. Scott organized the meeting, which took place on March 22, 2017. Dr. Grunwald spoke on the use of anesthesia in FOP patients. Updates on general aspects of FOP were provided, as well as reports from the 2016 Drug Development Forum in Boston, Mass. 

Attending the event were four FOP families, medical staff from Dr. Scott’s department, members of the Anesthesia department, and several professionals from the Physiotherapy and Occupational Therapy departments.

“I think these meetings are very important,” Dr. Scott said. “Having a rare disease can be very lonely and just knowing there are other people with the same condition navigating similar problems can be helpful.”

SA_Quote_2.jpgThe meetings allow for an informal environment where families and medical professionals mingle together over tea. Scientific developments are shared firsthand with patients, imparting hope and empowerment with the knowledge they need to help themselves. As the only FOP organization present in Africa, they also lend support to other countries such as Kenya, Morocco and Uganda. Over one billion people live in Africa and Dr. Scott is aware of the children and adults surely missing a diagnosis. He remains dedicated to raising awareness of FOP and lending support where he can. 

“The wonderful thing about the FOP community is the feeling of working towards awareness and treatment of FOP together,” he shared. “The unusually cruel nature of this condition and the character and leadership of the global FOP community seems to bind us together in a way that is unique. The spirit of togetherness and camaraderie is inspiring and provides a ray of hope for families walking the FOP journey.” 


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