Kelly’s Story

My Mastocytosis Story

In 2023, my husband and I decided to move from our home in San Antonio, TX to Fort Worth, TX to be closer to our daughters and grandkids. With a move to a new city comes the challenge of finding all new everything—including doctors. One of the first new doctors I saw was a dermatologist. I went in for a routine skin check and mentioned that I had been having brownish-red spots on my legs, arms, and torso that would welt up and itch when I was in the sun or heat. I’d been experiencing this for about 5–10 years. A previous dermatologist in San Antonio had told me they were just age spots.

The new dermatologist took a look, did a scratch test, and said, “Huh, I think I know what they are. I just went to a conference about this!” She did a punch biopsy on one of the spots on my leg, and it came back as Cutaneous Mastocytosis. She explained that it was a very rare and incurable skin condition. She then asked if I had any other symptoms. I told her I’d been experiencing fatigue, joint pain, flushing, hot flashes, abdominal pain, headaches, bloating, reflux, and recurring sinus infections—but I had attributed all of it to menopause. She said that those symptoms could be related to the mastocytosis and referred me to a hematologist.

The hematologist then did a bone marrow biopsy and extensive blood work, which came back as Systemic Mastocytosis. After the diagnosis, the doctor had me get a CT scan to see if there was any organ involvement beyond the bone marrow. There wasn’t, so it was classified as Indolent Systemic Mastocytosis. The doctor prescribed antihistamines and an EpiPen and told me I’d need to come back for blood work every few months to monitor the disease. I left the appointment not knowing anything about the disease, so I got straight to work researching. My only resource at the time was Google—and the information I found was pretty scary! At my next appointment, my hematologist scolded me for Googling and gave me a printout explaining the disease. Having that kind of resource at the time of diagnosis would’ve been really helpful.

Another new doctor I needed was an endocrinologist for my existing thyroid management. I told her about my new diagnosis, so she had me get a bone density scan, which came back showing moderate osteoporosis. She said, “Kelly, you need to increase your calcium intake and start doing weight-bearing exercises to try to improve your bone density!” So, I started walking and lifting weights daily. I also ordered a rebounder—a personal-size trampoline—to add variety to my workout. After I assembled the rebounder, I started lightly bouncing, and I felt a sharp, excruciating pain in the middle of my back. The pain was so intense I actually saw stars! I went to a chiropractor, who did an X-ray and told me I had a compression fracture at my T6. He said it would take up to six months to heal. The fracture has since healed, but I still have chronic back pain and have been unable to work or do normal day-to-day activities. Bone involvement, like osteoporosis, can be a symptom of systemic mastocytosis.

October of 2023 was like the perfect “health storm.” I was diagnosed with Cutaneous Mastocytosis then Indolent Systemic Mastocytosis, and moderate osteoporosis with a compression fracture. I wasn’t feeling well, I was constantly tired, my back hurt, and my life had become limited to low-impact activity. Simple things—picking up my grandsons, doing laundry, washing my dogs, exercising—were difficult, and still are. I had planned to keep working after our move to Fort Worth, but that didn’t turn out to be possible. The emotional toll this disease has taken on both me and my husband is real. The feeling of being a burden and not being able to “pull my weight,” both physically and financially, has been incredibly difficult.

One of the biggest challenges and frustrations for me is finding doctors who have knowledge of SM. Because this disease is so rare, most doctors either haven’t heard of it or have very limited understanding—and very limited time to research it. As a result, a lot of my symptoms get dismissed as “unrelated.” Even my PCP, who is supposed to refer me to specialists, doesn’t know any doctors who treat SM. The closest treatment and research center—MD Anderson—is five hours away and out of network with my insurance. The stress and frustration have been overwhelming. Having this disease feels like having a full-time job—but I’m not working for someone else; I’m working for myself and my health! I NEED A RAISE! LOL

Fast forward to 2025…
I’m on a new medication that’s been extremely helpful with my skin symptoms, but I still struggle some days with other symptoms, and the back pain, unfortunately, is still daily. I’ve found support through my family, Facebook mast cell groups, TikTok, and The Mast Cell Disease Society—places that remind me I’m not alone on this crazy health journey. I’ve learned how to advocate for myself, fight for my health, and recognize that there are many other women just now learning that their symptoms aren’t “just age spots” or menopause, as I was once told.

I remain hopeful for the future and for organizations like The Mast Cell Disease Society to help lead the way toward more research, better medical care, and, maybe one day, a cure.