Our friends with FOP in the news…
Despite its rarity, there are many articles written about FOP, both human-interest stories as well as academic articles.
A big thank you to everyone who shares their story, helping to raise awareness and understanding of FOP.
If you know of any article about FOP that is not listed here, please do let us know so we can add it to our library.
The impact of fibrodysplasia ossificans progressiva on patients and their family members: plain language summary of the results from an international burden of illness survey
Mona Al Mukaddam, Katherine S Toder, Michelle Davis, Amanda Cali, Christopher Bedford-Gay, Moira Liljesthröm, Suzanne Hollywood, Kim Croskery, Anne-Sophie Grandoulier, Elaine A Böing, John D Whalen & Frederick S Kaplan
Society for Radiographers Magazine
Mum and trustee, Helen Bedford-Gay, spoke to the Society of Radiographers to talk about the key diagnostic signs for FOP, including how a radiographer or sonographer can help with early diagnosis.
Miriam Rocke, from America, talks about her personal experience of living with a condition that makes it impossible to leave the house on her own, and compares it to what has been a wholly new experience for many, as the world gets to grips with living in a ‘lockdown’.
“A Paisley youngster with an incurable condition is tackling a charity challenge to raise cash for the hospital charity that cared for him.
Little Brodie Robertson is only five years old, but he has already overcome more than most people have in their lifetime.”
Their tissue turns to bone. Their joints freeze in place. And, finally, their hopes for treatment may be realized
Whitney Weldon, from New York, tells her story of living with FOP and how she doesn’t stop her living a busy life. From participating in clinical trials to college to shopping on Fifth Avenue.
Carol Orzel had FOP, a rare disorder in which connective tissue is replaced by bone. She wished her skeleton to be displayed at the Mütter Museum in Philadelphia. A year after she’d passed away, aged 58, her wish was fulfilled.
“Zoe Buxton can’t get herself dressed or do her own hair, yet she sustains a following of fashion and lifestyle enthusiasts with her blog and Instagram account.”
Jeanne Peeper is the founder of what is now known as the IFOPA. Read her diagnosis story here.
“When Jeannie Peeper was born in 1958, there was only one thing amiss: her big toes were short and crooked. Doctors fitted her with toe braces and sent her home. Two months later, a bulbous swelling appeared on the back of Peeper’s head. Her parents didn’t know why: she hadn’t hit her head on the side of her crib; she didn’t have an infected scratch. After a few days, the swelling vanished as quickly as it had arrived.”
Medical researchers struggle to understand—and hope eventually to cure—a bizarre and little-known disease that slowly but inescapably turns its victims into masses of solid bone.