Living Life on Her Own Terms with a Rare Bone Disease: Whitney

For people living with a chronic condition, rare disease, or disability—or all three— the feeling of independence can take many forms and may, at times, seem unconventional. Whitney, a woman in her 30s living with a rare disease who makes her home in the heart of New York City, says it took time to adjust to using a wheelchair. Now, she can’t imagine life without the ability to come and go on her own.

Whitney lives with fibrodysplasia ossificans progressiva (FOP), an ultra-rare genetic bone disease that causes muscles, tendons, and ligaments to gradually turn into bone. She describes it as “growing a second skeleton.” Some of her joints have locked in place, and she relies on full-time caregivers for most personal care. Yet, in part thanks to her wheelchair, she enjoys navigating the city on her own.

“Despite the challenges of FOP, I strive to live independently,” she says. “I want others with rare diseases to know that limitations don’t have to stop you from chasing your dreams.”

Whitney was diagnosed with FOP at age 9. While she took extra precautions growing up, her life was in many ways like that of a typical teen.  But by the time she left for college, FOP had started to take a toll. Whitney lost mobility due to excess bone growth and began using a wheelchair. The transition was difficult. At first, she was in denial—but gradually she came to view her wheelchair as something else. Today, she sees her wheelchair as a tool that helps her live the life she always imagined.

“Moving here and being in the hustle and bustle of NYC was a life goal of mine,” she says. “My caregiver helps me get to the elevator, but then I’m out the door—off to get coffee, hang out in the park, or meet friends in the neighborhood.”

Between work, friends, and activities, no two days look the same for Whitney. She works in-office two days a week and remotely the other three for an organization focused on improving accessibility in public transportation. Whitney often takes coffee breaks throughout the day and heads to her local café, where she’s a warmly welcomed regular. In her free time, she enjoys shopping, dining out, volunteering with a local arts organization, and spending time with friends and neighbors.

“I really understand the challenges for people with disabilities, especially when it comes to getting around the city,” she says. “I love helping make it easier for others.” 

Whitney has crafted a way of living with FOP that includes managing her condition and having the support she needs around her. Medication is also part of managing her condition. Each morning, Whitney takes Sohonos™ (palovarotene) capsules. Sohonos is a prescription medicine used to reduce new bone formation in adults and children aged 8 years and older for females and 10 years and older for males with FOP. She believes the treatment has helped her reduce new bone growth. 

Whitney talked to her doctor about benefits and side effects including important information like Sohonos can cause birth defects if taken during pregnancy, bone growth changes, and other side effects related to skin, bone mineral density, new or worsening mental health problems and night-blindness-vision problems.

“Managing the flare-ups that come with FOP has been very challenging,” she says. Flare-ups are unpredictable episodes of soft-tissue swelling that can lead to new bone growth. 

Whitney hopes to change how people view FOP and disability.  She feels fortunate to be living her dreams in one of the world’s biggest cities. She hopes her story will inspire others living with rare diseases to pursue their goals. 

“It’s easy to worry about whether your child will grow up to be independent or hit milestones like finishing school and going to college,” she says. “I don’t let fears like that stop me from living. I’ve reached so many milestones in my life, just a bit differently than others, and I have so many more to look forward to.”

 

WHAT IS SOHONOS?

SOHONOS is a prescription medicine used to reduce the amount of new heterotopic ossification in adults and children 8 years of age and older for females and 10 years and older for males with fibrodysplasia ossificans progressiva (FOP).  SOHONOS is not recommended for females younger than 8 years of age or males younger than 10 years of age.

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about SOHONOS?
SOHONOS can cause birth defects (deformed babies) if taken during pregnancy. Females who are pregnant or who plan to become pregnant must not take SOHONOS.

• • • Your healthcare provider will ask you to take a pregnancy test 1 week before starting treatment with SOHONOS, periodically during treatment, and 1 month after you stop treatment
    • You must use effective birth control (contraception) starting at least 1 month before starting treatment with SOHONOS, during treatment, and for 1 month after the last dose. Talk to your healthcare provider about birth control methods that may be right for you.
    • If you become pregnant or think you may be pregnant during treatment with SOHONOS, stop taking SOHONOS and call your healthcare provider right away.

Because SOHONOS can cause birth defects, SOHONOS is only for people who can understand and agree to carry out all instructions for pregnancy prevention.

SOHONOS can cause bone growth changes. Children may stop growing while taking SOHONOS. Bone growth changes such as permanent early closure of the growth plate in growing children have happened with SOHONOS. Your healthcare provider will closely monitor your child’s bone growth and height during treatment with SOHONOS. 

Who should not take SOHONOS?
Do not take SOHONOS if you are pregnant, or allergic to medicines known as retinoids or any of the ingredients in SOHONOS.

What should I tell my healthcare provider before taking SOHONOS?
Before taking SOHONOS, tell your healthcare provider about all your medical conditions, including: 

• • • have bone loss (osteoporosis), weak bones or any other bone problems
    • have or had mental health problems
    • have or have had kidney problems
    • have or have had liver problems 
    • are breastfeeding or plan to breastfeed. It is not known if SOHONOS passes into your breastmilk. Breastfeeding is not recommended during treatment with SOHONOS and for at least 1 month after the last dose of SOHONOS. Talk to your healthcare provider about the best way to feed your baby if you take SOHONOS. 

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. SOHONOS and certain other medicines can interact with each other, sometimes causing serious side effects. Keep a list of your medicines to show to your healthcare provider and pharmacist when you get a new medicine.

What should I avoid while taking SOHONOS?

• • • Do not get pregnant while taking SOHONOS.
    • Avoid excessive exposure to sunlight and ultraviolet lights (tanning machines). SOHONOS may make your skin more sensitive to the exposure and you may burn more easily. Apply sunscreen and wear protective clothing and sunglasses when in sunlight. 
    • Avoid driving at night until you know if SOHONOS has affected your vision. SOHONOS may decrease your ability to see in the dark. 
    • Do not donate blood while taking SOHONOS and for 1 week after stopping SOHONOS. 

What are the possible side effects of SOHONOS?
SOHONOS can cause serious side effects, including: 

• • • skin-related events such as dry skin, lip and eye, hair loss, itching, redness, rash, and skin peeling. You may be at increased risk of developing skin and soft tissue infections while taking SOHONOS. If you develop these symptoms, your healthcare provider may tell you to use moisturizer, sunscreen, or artificial tears.
    • bone mineral density problems (bone thinning) which can increase the risk of fractures in adults and children. Your healthcare provider should check you for this during treatment with SOHONOS.
    • new or worsening mental health problems that may include depression, anxiety, mood changes, and suicidal thoughts and behaviors. If you have a history of mental health problems, you may be at a higher risk of developing these side effects. Call your healthcare provider if you develop new or worsening mental health symptoms during treatment with SOHONOS. Your healthcare provider should monitor you for signs of depression and refer you for appropriate treatment, if necessary.  
    • vision problems (night blindness) which may cause difficulty seeing at night or in low lit areas. Your healthcare provider should send you to see an eye specialist if you experience vision problems. 

The most common side effects of SOHONOS include:

• • • • • dry skin
        • dry lips
        • hair loss
        • itching 
        • redness
        • rash
        • skin peeling
        • drug eruption
        • skin irritation 
        • swelling and small cracks in corner of the mouth 
        • nausea
        • muscle and joint pain
        • dry eyes
        • headache
        • fatigue

These are not all the possible side effects of SOHONOS. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Please see full Prescribing Information, including Medication Guide with IMPORTANT WARNING.

Learn more about a treatment option for FOP on Sohonos.com. 

SOHONOS is a trademark of Clementia Pharmaceuticals Inc. 

© 2025 Ipsen Biopharmaceuticals, Inc. All rights reserved. June 2025. SOH-US-000764