How to care for a loved one with systemic mastocytosis

Photo shows a female caregiver helping a woman carry home groceries/Getty Images
Female caregiver helping a woman carry home groceries/Getty Images
By proactively caring for your loved one with systemic mastocytosis, you can help improve their mental health and reduce their symptoms.

People living with systemic mastocytosis (SM) face daily challenges in managing their symptom triggers and the resulting symptom burden. The support of loved ones in both emotional and practical capacities is an important part of living well with SM.

By proactively caring for your loved one with SM, you can help improve their mental health and wellbeing, as well as their physical comfort.  

What is systemic mastocytosis?

SM is a rare white cell blood disorder in which mast cells proliferate abnormally and accumulate in the skin, bones, bone marrow and internal organs. It occurs as a result of a gene mutation and is usually diagnosed in adults aged 40 to 50 years. There is no cure, and treatment focuses on symptom management through medication and diet and lifestyle changes to avoid symptom triggers.

When mast cells detect bacteria or allergens in the body, they trigger an immune response releasing histamines and other chemicals into the bloodstream. This causes an allergic reaction, including symptoms such as flushing, rashes, hives, stomach pain, joint pain, digestive issues, mood changes and potentially, anaphylaxis.

Learn more about SM treatment and care

Tips for supporting your loved one with SM

By treating your loved one with SM patience and empathy, you will ensure they are not facing their daily challenges alone. You can also support them by encouraging them to adapt their diet and lifestyle to better manage symptoms, to attend regular doctor’s appointments and to prioritize their emotional and mental well-being.

Managing symptoms

The severity of SM symptoms varies from person to person, but by recognizing the different triggers, symptom acuteness and frequency of symptoms can be reduced.

SM symptoms may be activated by emotional stress, physical exertion, sudden changes in temperature, spicy food, certain medication, alcohol and insect bites.

By encouraging your loved one to stay vigilant in avoiding triggers, you will help prevent physical pain and discomfort from the onset of symptoms, and the risk of anaphylaxis. Showing solidarity by adopting the same diet and lifestyle can be a great way to support your loved one and make them feel less alone.

Attending medical appointments

Regular appointments with the healthcare team is essential for optimal SM treatment and management.

By emphasizing the importance of continuity of care, or even accompanying your loved one to their appointments, you can help strengthen this collaboration. Even if you’re not able to attend the appointments with your loved one, you can help support them by making sure everything is taken care of in the home when they return, or volunteering to take over any household tasks for the day so they aren’t overwhelmed.

Providing emotional support

Maintaining good mental health is often difficult in the face of SM, and coping with SM symptoms can be stressful.

By recommending your loved one adds meditation, low impact physical activity and a good sleep schedule to their routine, you will help contribute to their emotional and mental well-being.

You can also suggest to your loved one to join online or in-person support groups to strengthen their community and support network. Shared experience and advice from someone else living with SM is invaluable in successfully managing this rare disease on a daily basis.