A healthy lifestyle is always a good idea, but it’s especially important when you have advanced systemic mastocytosis, says Aaron Gerds, MD, a hematologist and oncologist at Cleveland Clinic in Ohio.
“Following the basic ‘common sense’ recommendations on a balanced, healthy diet, and regular physical activity is incredibly important for a disease of this nature,” says Dr. Gerds.
Not only will this improve your overall health and quality of life, it may also make you eligible for more treatment options for advSM, he says.
“For example, if you had severe heart disease, and we thought that a certain treatment might help your condition but could potentially make the heart disease worse, it may preclude you from getting the treatment for the disease. So I think maintaining your health and wellness otherwise is one of the most important things that patients can do for themselves in the face of this disease,” says Gerds.
Diet
Current guidelines don’t suggest any special diet for people with advanced systemic mastocytosis, but some experts recommended a low-histamine diet, especially for people who have systemic mastocytosis that hasn’t developed into an advanced form of the disease.
For most people with advanced systemic mastocytosis, following a healthy and balanced diet that supports overall health is recommended, says Jason Gotlib, MD, a professor of hematology at Stanford University School of Medicine and a hematologist at Stanford Health Care in California.
Exercise
Unless symptoms or medication side effects make it too painful or difficult, Gerds recommends that people continue to engage in physical activity.
It’s important to note that exercise can trigger symptoms, because it raises the body’s internal temperature and is a form of stress on the body. Strenuous exercise, especially in hot or humid conditions, usually isn’t a good idea.
Avoid Triggers
Systemic mastocytosis can be unpredictable, in part because of triggers that can worsen symptoms. And having to be “on guard” 24/7 is psychologically trying.
When spending time outside, people with advanced systemic mastocytosis need to avoid insect bites (such as ant bites) and wasp and beestings, which can cause a potentially life-threatening allergic reaction. Sudden temperature changes are also triggers.
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