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It took me around 10 years to finally get my indolent systemic mastocytosis (ISM) diagnosis. My previous dermatologist had told me the reddish-brown spots on my chest and legs that would flare in the sun and heat were just age spots. But when I moved from San Antonio to Fort Worth three years ago, my new doctor suspected the spots could be something more and ultimately diagnosed me with ISM.

Getting Answers

Despite bringing me a diagnosis, the doctor couldn’t give me any more clarity. He didn’t know much about the condition, other than it being a rare and incurable mast cell disease, and so he couldn’t offer any information about how to understand it or what to expect going forward. He just prescribed anti-histamines and said, “See you in three months.”

I went home and started doing research. I was invested in finding out what this was. So, for our second appointment, I came back with a lot of questions. His response felt like a slap on the wrist: “Don’t go to Dr. Google.” But I was given no resources, so I had to figure it out on my own.

I found more information—and validation—in a Facebook support group for people with systemic mastocytosis. It was a community, people I could relate with. I could sit down and type, “Is anyone experiencing this?,” and get someone saying, “Yes, that’s a symptom.” It was a place I could speak, be heard, and be validated. It was probably the most positive thing after my diagnosis.

Treatment and Symptoms

My initial treatment for ISM was standard: an antihistamine and an acid reducer. But in the support group, people were talking about a new drug just for mastocytosis called Ayvakit (avapritinib). I brought it to another new doctor I was seeing, an oncologist. He didn't know much about the drug but was supportive. It ended up being right for me, and we added it to my treatment plan, all because I was able to advocate for myself.

My medication has resolved or significantly improved my symptoms, including the body rash, itching, fatigue, brain fog, and joint and muscle pain. However, I still get fatigued easily, especially when I spend time in the heat or sun, which I have learned is a primary trigger for me.

Even though the medication prevents a skin reaction to the sun, it doesn’t completely eliminate the effects on my system as a whole. Before ISM, I loved being out in the sun—I could spend the whole day lying at the beach or working in my garden. Now, I have to be careful to stay in the shade and limit my time outside in the heat, which can be difficult in Texas.

In addition to my ISM diagnosis, I’ve had other health conditions arise in the last few years, including osteoporosis, chronic kidney disease, and chronic back pain. Some of these could be related to ISM. For example, before my diagnosis, I was taking a high amount of nonsteroidal anti-inflammatory drugs (NSAIDs), like Advil, to treat daily headaches that I now know are a symptom of the condition. But the long-term use of NSAIDs can lead to kidney issues.

Managing My Mental Health

Because I’ve had to focus on my health, I haven’t been able to work since moving to Fort Worth, which has been a major lifestyle change for me.

Last year, I started to feel like a burden on my husband and family, especially with growing medical bills, which led to feelings of depression. I knew I needed extra support, so I found an equine therapy center down the road from me. I was able to spend time with the horses and talk to a therapist. Talking to someone who didn’t know me or my situation and just listened was really healing for me.

Something I learned later is that anxiety and stress can be symptoms of mastocytosis. Therapy helped me locate where I held anxiety in my body—I clench my jaw—and how to use breathing techniques to focus and calm myself down. And my two dogs at home help, too.

How My Social Life Has Changed

Another major lifestyle change since diagnosis has been my social life. I used to be very outgoing and loved spending time with friends and neighbors. Now, I don’t always feel like being around people. My energy levels are much lower, and I don’t want to go into a social setting and tell people I’m not feeling well or feel like I have to fake it.

Luckily, online communities have been a great way for me to connect with people. In addition to the Facebook groups, I started using TikTok as an outlet to share what’s happening in my health journey. It’s helped me reach so many new people, and now I feel like I’m helping others on their own mastocytosis journey.

Through social media, I’ve connected with a few people with systemic mastocytosis who I’ve now met in person. Each one of us has a different level of the disease and a different set of symptoms, but we all have that one thing in common and can offer support to each other. Social media brought us together, but we were able to really connect and develop a friendship.

The Importance of Advocating for Myself

Having a rare condition like ISM, I’ve had to do so much of my own research and find resources and support like the social media groups. A lot of doctors I’ve seen aren’t familiar with my condition and aren’t willing to put in the time to learn or listen to what I have to say. It’s easy to feel dismissed, which is why advocating for myself has become so important.

I asked my doctor in Fort Worth about possible drug trials I could join, which led me to MD Anderson. As a cancer and research center, this new environment of doctors is more curious and willing to figure things out. I feel much more supported here than with previous doctors.

We have to be our own number one advocate. No one is going to do this for us; it’s up to you to find out information, ask your questions, and battle the insurance companies. We have to dig a little deeper and fight for our health.

As told to Hannah Harper

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