Who Should Be on Your Care Team for Systemic Mastocytosis?

As is so often the case with medical conditions, there’s no one-size-fits-all experience with systemic mastocytosis (SM). And everyone’s symptoms are different.

Some people have skin rashes; some people don’t. Some people have chronic diarrhea; some people don’t. And in some people, abnormal mast cells mostly accumulate in certain tissues, while in others, the disease affects multiple organs throughout their body.

“Systemic mastocytosis is a complex blood disorder that can bring a range of symptoms and clinical features,” says hematologist-oncologist Aaron Gerds, MD. “That means your medical care team may need to include a variety of doctors in different specialties.”

Your systemic mastocytosis team

When you have systemic mastocytosis, feeling your best means working with a variety of specialists and primary care providers. But who exactly makes up your care team will depend on the specifics of your condition, like:

• What type of systemic mastocytosis you have: There are six types of SM, each of which moves at a different pace and affects your body in different ways. 
• Which symptoms you’re experiencing: SM can cause symptoms related to your skin, bones, liver, spleen, lymph nodes, digestive system and more.
• Other individual factors: Your physical and mental health and lifestyle will all play a role in who needs to be a part of your team.

Here’s who’s likely to be a part of your team and which other specialists may rotate in as needed.

Hematologist-oncologist

Your hematologist-oncologist is the one who oversees your systemic mastocytosis care.

But who are they, exactly? Hematologists specialize in blood disorders, and oncologists specialize in cancer. A hematologist-oncologist, then, is a doctor who specializes in diagnosing and treating blood cancers. (That title is a mouthful, so you might sometimes hear them referred to as “heme-onc doctors.”)

Depending on where you live and where you’re seeking care, your hematologist-oncologist may bring in an even more specialized provider to consult on your health.

“Right now, systemic mastocytosis is still considered relatively rare, and not all general hematologist-oncologists specialize in it,” Dr. Gerds notes. “So, they may partner with an expert in mastocytosis at a referral center — someone who can help fine-tune your overall treatment and management plan.”

Allergist/immunologist

When you have systemic mastocytosis, cells in your immune system (mast cells) release too much histamine, the chemical that causes allergy symptoms. This can make you hypersensitive to lots of different allergens.

Coming in contact with these allergens can trigger allergic symptoms, like:

• Chronic hives
• Rashes
• Itchy skin
• Skin flushing
• Gastrointestinal issues
• Anaphylaxis

“Many of the symptoms of systemic mastocytosis are caused by histamine release,” Dr. Gerds notes. “So, the multidisciplinary teams caring for people with this disease often include an allergist/immunologist.”

Primary care physician

Even though specialists will guide your overarching systemic mastocytosis care, it’s still important — really important! — to develop a relationship with a primary care provider.

“When you have systemic mastocytosis, a good primary care doctor is critical,” Dr. Gerds emphasizes. “They can help coordinate everything, from your SM care to all the other types of care you need.”

Your primary care provider can partner with your hematologist and other specialists. They’ll also:

• Help you identify your triggers and manage your systems.
• Coordinate regular lab work and other types of testing.
• Make sure you’re being properly screened for other conditions, like high blood pressure and diabetes.

Other providers on your SM care team

Again, who you see will depend on your symptoms. But it’s common for people with systemic mastocytosis to have the following types of specialists on their care team:

• Dermatologists address skin symptoms.
• Gastroenterologists help manage problems like chronic diarrhea.
• Rheumatologists monitor bone health and help manage inflammation.
• Cardiologists keep an eye on your heart health.
• Mental health providers can help you cope with the psychological and emotional stress of living with a chronic condition.

And that’s not necessarily a complete list.

“When you have systemic mastocytosis, the way you feel and how you experience the disease can change over time,” Dr. Gerds notes. “So, if you develop a new symptom, we may need to bring in new specialists to figure out what’s going on and how to manage it.”

Final thoughts

Before you were diagnosed with systemic mastocytosis, you may have visited a variety of specialists for a bunch of symptoms that seemed unrelated — just trying to piece together the puzzle of your big-picture health. It might’ve felt challenging, frustrating and isolating.

Receiving a diagnosis finally puts together some of those puzzle pieces. But it may still feel like a moving target, with symptoms that can affect all different parts of your body and change over time.

“There’s so much variability in the way that this disease can present, so everyone’s experience is individual,” Dr. Gerds acknowledges. “Your journey won’t be the same as the next person's journey.”

The good news: You don’t have to navigate systemic mastocytosis on your own. Having the right care team on your side can make all the difference.

Once you have a support system in place, you’ll be able to lean on them for support, ask them for advice and turn to them in moments when the future feels uncertain. They’ll help you address the challenges of systemic mastocytosis as they come — and give you the confidence you need to move forward.