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
Future Rare Diseases
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
September 2022
FOP: how to spot this rare genetic disease
Society for Radiographers Magazine
December 2021
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.
The ‘Anticipatory Fear’ of Life With (and Without) a Disability During Covid-19
Miriam Rocke
July 2020
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’.
Brave little Brodie gets on his bike to thank hospital team that cared for him
Carla Talbot
May 2020
“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
Damien Guarde
March 2019
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.
Philly woman with rare bone disease donates skeleton to Mütter Museum
Dana Bate
February 2019
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.
FOP: Instagram star who is turning to bone
Erinn Kerr
January 2019
“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.”
Boy Growing Second Skeleton…
Erin Cardiff & Chris Kitching
August 2018
Read Ellis’ story, as told by his mum Suzanne, as they learn to live with the diagnosis of FOP.
The Girl Who Turned To Bone
Carl Zimmer
June 2013
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.”
