Adapting to life with FOP, a rare disease that turns soft tissue to bone

(BPT) – As a 24-year-old, Erin Danzer enjoys expressing herself through art, such as painting, designing resin jewelry and making scarves to gift to her friends and family. She received her associate degree in communications and is currently pursuing her passion to create adaptive fashion by taking courses in clothing design. Her dream is to design clothes for a company or launch her own fashion line focused on inclusivity and accessibility of fashion for people living with disabilities.Her inspiration arises from something deeply personal: Danzer is living with a rare disease, fibrodysplasia ossificans progressiva (FOP), which causes permanent and continuous bone growth in soft and connective tissues like muscles, tendons, and ligaments.1Growing up, Danzer’s parents noticed she had turned-in big toes and a reoccurring bump on her head. After visiting several pediatricians and specialists in a search for an answer, Danzer’s parents brought her to a geneticist, who eventually diagnosed FOP.FOP impacts up to 400 people in the U.S. and can cause unpredictable episodes of rapid bone growth, which includes soft tissue swelling, pain, reduced movement and stiffness, also known as flare-ups.1,2 Ultimately, continuous bone growth and flare-ups severely restrict mobility and function — even leading to joints being locked for life.3“Usually if I’m going through a flare up, I start to lose range of motion,” explains Danzer, “and because FOP is so unpredictable, sometimes I regain that range of motion, but other times it’s permanent and I lose function or mobility of that joint completely.”Over the years, Danzer has met others in the FOP community and she’s struggled with how the disease can impact people differently by progressing at a different rate for each individual. “Compared to someone not living with FOP, obviously my mobility and function were really affected. But, when compared to someone living with FOP, I didn’t feel as affected as some others — sometimes those feelings were difficult for me,” reflects Danzer.Changing expectations on independenceAs a teen, FOP mainly impacted Danzer’s ability to reach above her head limiting her ability to dress herself, reach for items and even participate in conversations at school. “I always had the issue of the teacher not calling on me because they couldn’t see my arm raised. I adapted by using a finger pointer to raise my hand,” Danzer explains.Slowly, FOP has impacted Danzer’s independence and challenged her ability to adapt. Several years ago, her car was modified to allow her to drive independently and now she can no longer operate it on her own. At the suggestion of her care team, Pine was brought into her life. Pine is a service dog who provides her support, companionship and helps her maintain her independence by opening doors, turning lights on and off, picking up items and even helping her pay at a store.As FOP continues to impact Danzer’s life, Pine is also trained to adapt with her by learning new commands and executing more personalized tasks. The companionship is certainly another helpful aspect to support Danzer’s social and emotional wellness.“Once I was in a wheelchair, I became very closed off. I didn’t want to talk about living with a rare disease since I felt as though others saw me only as living with a disability,” Danzer shares. “I didn’t really know how to talk about it and Pine really helped me open up as a person and be comfortable talking to people. I felt as though people were able to see Pine first, before the wheelchair, and that gave me confidence.”For Danzer, life is about living every day to the fullest extent possible.“I appreciate all the experiences, opportunities and the people that I’ve met so far in my life, as they make me who I am. While it can be difficult processing changes in my level of independence as my function and mobility become more restricted, what has helped me cope is knowing that I can still try new things, challenge myself and meet new people.” she said. “Life is about adapting, so surround yourself with people — or furry companions — who support you as you evolve.”To learn more about FOP, including resources, visit FocusOnFOP.com.Content sponsored by Ipsen Biopharmaceuticals.###1. Pignolo RJ, Hsiao EC, Baujat G, Lapidus D, Sherman A, Kaplan FS. Prevalence of fibrodysplasia ossificans progressiva (FOP) in the United States: estimate from three treatment centers and a patient organization. Orphanet J Rare Dis. 2021;16(1):350. Published 2021 Aug 5. doi:10.1186/s13023-021-01983-22. Pignolo RJ, Shore EM, Kaplan FS. Fibrodysplasia ossificans progressiva: diagnosis, management, and therapeutic horizons. Pediatr Endocrinol Rev. 2013;10(0 2):437–48.3. Pignolo RJ, Bedford Gay C, Liljesthröm M, et al. The natural history of flare-ups in fibrodysplasia ossificans progressiva (FOP): A comprehensive global assessment. J Bone Miner Res 2016: 31(3) 650–6.12/2022 NON-US-003340