Your guide to systemic mastocytosis and anemia

Tired woman lying down on couch
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In SM, overactive mast cells cause anemia in two ways.

For many patients, routinely feeling tired and weak is just part of daily life with mast cell disease — but it could also be due to anemia. Anemia is a complication of systemic mastocytosis (SM) that can occur over time as SM progresses. It affects an estimated 30% to 50% of people with SM. The symptoms of anemia can impact quality of life and have serious consequences if left untreated.

What is anemia?

Anemia means a low red blood cell count. When the body doesn’t have enough red blood cells, it struggles to carry oxygen from the lungs to the organs. This affects the body’s capacity to function normally. Anemia can affect your overall immunity and health; if left untreated it can lead to severe consequences, including heart failure and death.

In SM, signs of anemia can often be overlooked or associated with common SM symptoms. Anemia often presents with the following symptoms:

  • Fatigue
  • Feeling weak
  • Lack of energy
  • Dizziness, light-headedness
  • Headaches
  • Shortness of breath
  • Rapid or irregular heartbeat

Read more about SM signs and symptoms

How does anemia occur in SM?

In SM, overactive mast cells cause anemia in two ways. Mast cell activity in the bone marrow can impact the production of red blood cells, leading to anemia.

Mast cells are specialized cells of the immune system that mediate inflammatory responses and allergic reactions. They are found in the body’s connective tissue.

In addition, the buildup of mast cells in the stomach and intestines causes irritation and inflammation, which results in the poor absorption of vitamins and nutrients. Being deficient in iron and vitamin B12 will further impair the body’s ability to produce healthy red blood cells, resulting in anemia.

Tips for managing anemia in systemic mastocytosis

Managing anemia in people with SM requires treating a range of factors:

Medication: SM medications such as H1 and H2 antihistamines, corticosteroids and sodium cromolyn prescribed by your doctor will reduce the severity of allergic reactions. H2 antihistamines will help improve gastrointestinal symptoms, allowing for better absorption of iron and nutrients in the gastrointestinal tract.

Lifestyle: Healthy living and avoiding your personal symptom triggers will reduce the frequency of symptom flare-ups. Less volatile mast cell activity will improve your quality of life, but also the wear and tear on your organs.

Diet: Ask your nutritionist to define a low-histamine diet that won’t trigger a symptom episode but that is rich in iron and other vitamins that boost red blood cell production.  

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