Black History Month and Scleroderma
- SFGC
- Feb 2
- 7 min read
For Black History Month, we’re spotlighting powerful voices in the scleroderma community as we note the outsized impact the disease has on African Americans. Research and medical experts tell us that scleroderma is more prevalent and severe among African Americans1 and that Blacks — especially women — are more likely to be diagnosed at younger ages2. We spoke to two African American scleroderma warriors: Josette Frye-Mitchell and Monika Hilton. Josette pushes for scleroderma awareness including on Capitol Hill and leads scleroderma support groups for people around the country. A former account supervisor for the State of Ohio, she lives in Columbus with her husband and has two grown children. Monika is an author and artist and leads The Mo Experience Foundation. The former competitive baker and chef has three grown children and lives with her husband in the Atlanta area.
Here are their insights (with answers edited for space):
Q: When did your scleroderma symptoms begin, and how were you diagnosed?
Josette Frye-Mitchell: Around 2010 I started noticing things including extreme fatigue. I was working full-time, getting my master’s degree, tutoring, raising kids, helping my mom. I assumed I was just doing too much. Then my hands started turning colors. I would continuously scrub them because I thought what I was seeing was dirt. Then they started swelling. I went to different doctors, and they were testing me for lupus and other things. Finally, after two years, a dermatologist did a biopsy and told me I had scleroderma. I was 43.
Monika Hilton: My symptoms started in late 2016. I had tingling, numbing and tightening in my fingers. My knuckles were puffy. Doctors first told me it was carpal tunnel, then rheumatoid arthritis. But the symptoms didn’t match because I also had pain and fatigue. I ended up going to Emory in 2017, and that’s when I was diagnosed with limited scleroderma. I was 40.
Q: What were your symptoms like as the disease progressed?
JFM: My hands swelled and my fingers curled up like little sausages. I couldn’t open a water bottle or put on my clothes. The cold Ohio weather made everything worse. Within months I could barely walk. And my skin became very hard. Later, my skin unexpectedly began softening again and my fingers uncurled, but then the disease moved inward, to my esophagus, causing GERD, gastroparesis, and severe itching where it felt like I wanted to rip my insides out.
MH: Early on, it was tight hands and fatigue. But by 2018-19, my fingers began to curl, and my arms tightened so badly that I lost function in my right, or dominant, hand. I also developed calcinosis cutis, Raynaud’s, and digital ulcers. Those are probably the most painful. I don’t have any lung involvement or heart or kidney issues, but the hand involvement alone is really, really tough.
Q: For Black History Month, we’re spotlighting the higher burden scleroderma places on African Americans. Has that matched your experience?
JFM: In my experience, it moves faster among African Americans. It escalated quickly in me. I have Black friends who lost limbs or needed double lung transplants. Many African Americans aren’t diagnosed early because they’ve never heard of scleroderma. And symptoms like color changes in hands from Raynaud’s are harder to see on darker skin. I only noticed it on my palms.
MH: I do feel like my case turned serious fast. And I can only talk about the African American community, because I don't know what's offered to the other races, but I don't think there are enough research trials for us, and I don’t think enough information is offered. It’s often too much medication, not enough conversation.
Q: Scleroderma forced you to give up your career. What was that like?
JFM: Depression became my best friend because it was just so hard. I’d worked my whole life since I was 13. Suddenly, everything, my career, my goals, my dreams, was gone. My kids asked if we’d lose our home. I felt ashamed and embarrassed. I felt like I just had no place to go in life.
MH: Devastating. Cooking was my life. I’d competed on Cake Wars (Food Network) and Sugar Rush (Netflix), I ran a business, and my kids helped me in the kitchen. When my hands got too tight to bake, I had to accept that chapter was over. That did not go well at first. I was ashamed of how much my appearance changed. I didn’t want to take pictures or videos. I didn’t want to be seen. The fatigue was terrible. Some days I couldn’t lift my head off the pillow. My husband and daughter had to cut my food and pick up my glass for me. I felt like I was dying.
Q: What was your lifeline?
JFM: A physical therapist noticed how depressed I was and looked up local support groups for me. At that time, I didn’t know anyone, black, white, any race, who had this disease. My family didn’t understand it. That support group was a lifesaver. Some of those men and women are still my friends today.
MH: What helped was people reaching out, telling me I was inspiring them when I shared information publicly. That encouraged me, and once I regained a bit of confidence, I resumed recording videos, taking pictures, and speaking up.
Q: How do you raise awareness about scleroderma?
JFM: I go to Capitol Hill and meet with state legislators. I invite people I meet at conferences or walks to talk, face to face or on Zoom, in a group or one-on-one. I stay connected with people around the world and across the country: Idaho, Seattle, Hawaii, and California. We are all affected by scleroderma differently, but to be able to exchange information, talk about different doctors, let feelings out, or even to cry. I tell people, "Hey, here's my number, call.”
MH: I talk about it everywhere. I wear things that say, “Scleroderma Warrior.” I make it a conversation starter. One time in the post office, a woman said she didn’t want to be rude but asked if I’d been in a fire. Of course, it was rude as hell. But I said, “No fire, and I’m glad you asked,” and explained scleroderma to the entire room. People isolate because they’re embarrassed by physical changes. I was that person, too. I also started The Mo Experience Foundation, originally to provide scholarships for culinary students. But as my scleroderma progressed, the mission expanded. Now the foundation includes everything “Mo” including the awareness work I do and my annual glove drive. Every year for my birthday in September, people mail me gloves. I make care packages with the gloves, hand warmers, lotion, and send them to people dealing with Raynaud’s or ulcers.
Q: What keeps you going? What gives you purpose?
JFM: Becoming an advocate was a way to pull myself back. Helping others helps me. It keeps me uplifted. My main vision for right now is to make as many people aware of scleroderma as possible, just to get it out there.
MH: I believe raising awareness about scleroderma is my assignment from God, though I did not feel good about this assignment for a very long time. I used to think my name would be in lights because of cooking, and in some ways, it was. But now I think the real purpose is using my voice to speak out about scleroderma.
Advice and tips for others with scleroderma
From Monika
Educate yourself.
Read, read, read. Read everything your doctors are reading. Understand the medications and how they interact.
Ask questions and don’t settle.
I had a dentist consult a colleague to try to save my teeth. I knew I was going to stick with him. But on the other hand, at the very beginning of my scleroderma journey in 2016, I had an appointment with a rheumatologist, and we're in there Googling “scleroderma” together. I was like, "Oh no!” I didn't go back.
Track your symptoms.
Journal everything and bring the journal to appointments so you’re not relying on memory.
Keep moving.
Doctors waited too long to tell me how important stretching is. Stretch, stretch, stretch, and never stop moving.
From Josette
Make a medication spreadsheet.
Include doses, frequency, everything, and give it to every doctor you see.
Bring lists of questions to your doctor appointments.When you’re overwhelmed, you forget the important things. Use the notes app on your phone. And if you’re too intimidated to say it out loud, just show the list to the doctor.
Never assume.
With rare diseases, you must speak up.
Listen to your body.
I had to create a “new normal” and accept that I can’t do everything I used to. I used to go to the gym all the time, and now I walk briskly for five minutes a day if that’s all I can do. I had to stop eating the huge fruit salads I love when gastroparesis hit. I had to tell my friends, "Look, I cannot go to these concerts. I can't do everything that you guys can do anymore." Don't make yourself sicker just because in your mind, it's hard to accept the new normal. You have to get past that denial stage.
Beyond the Blog Post
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Josette Frye - Mitchell
Josette serves as a support group leader for the Ohio support group and as a member of our scleroderma advocacy team. After her diagnosis, she became deeply committed to patient support and awareness, using her lived experience to strengthen community connection and advance advocacy efforts on behalf of those affected by scleroderma.
Connect with a support group! https://www.stopscleroderma.org/support
Monika Hilton
Monika, known as Mo, is a scleroderma advocate, artist, culinary consultant, and founder of the Mo Experience Foundation. A former celebrity chef, she was forced to step away from the kitchen in 2018 when scleroderma affected her hands. Rather than retreating, Mo transformed her creativity into art and advocacy, writing her book I Decided and becoming a strong voice for Black and Brown women living with scleroderma. She is also an active member of our Scleroderma Advocacy Team, helping amplify patient voices and drive change.
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