If you have recently been diagnosed with systemic mastocytosis (SM), you will soon meet a range of specialists involved in your care and treatment. These specialists will work together as a team to monitor and treat every aspect of your disease.
What is SM?
Systemic mastocytosis (SM) is a rare hematological disease characterized by mast cells that are overactive and accumulate in different parts of the body such as the bone marrow, liver, spleen, gastrointestinal tract and lymph nodes.
What is a care team?
SM is a rare blood disorder, so a diagnosis is usually confirmed with a hematologist, a doctor who specializes in blood disorders and cancer. Following diagnosis, your hematologist will build a care team with specialists from several different disciplines. These specialists will have experience in caring for patients with mast cells disorders and SM. Together they will monitor the evolution of symptoms, adjust your treatment plan and give advice on avoiding symptom triggers.
Once the care team is formed, your hematologist will maintain a central role in the communication and coordination between all the specialists.
Read more about SM treatment and care
What are the benefits of a care team?
A multidisciplinary team ensures a comprehensive approach to a complex disease, with each expert responsible for managing an aspect of the disease or an affected organ. Since you’ll have a whole team supporting your health, you’ll have access to the right specialist for every aspect of living with SM.
Specialists work collaboratively, with clear communication channels and shared access to medical records and test results. This means each specialist will have a comprehensive picture of your health, and won’t need to order repeat tests if you’ve already had them.
Who are the specialists on a systemic mastocytosis care team?
SM has a diverse symptom burden that affects the skin, the gastrointestinal tract and the bones, so you may have several different specialists on your care team.
Here is a brief summary of the role of the specialists and other health professionals you may interact with on a regular basis:
Hematologist: A hematologist will usually be your first point of contact. They will manage your treatment and monitor your disease progression.
Allergist/immunologist: An allergist or immunologist is a doctor who manages your risk of anaphylaxis. They provide treatment, as well as guidance on avoiding allergic reactions and how to react in an emergency situation.
Gastroenterologist: Gastroenterologists provide treatment and monitoring of the gastrointestinal tract, which is significantly affected by mast cell buildup. Symptoms they may help with include bloating, nausea, diarrhea and vomiting.
Dermatologist: Dermatolgists are doctors who specialze in skin, hair and nails. In SM, they help manage the treatment of skin irritations: flushing, itchiness and hives are very common in SM. You may need regular follow-ups to track the evolution of your symptoms and their triggers.
Dietitian/Nutritionist: A dietician can give advice on adopting a low-histamine diet to avoid triggering mast cell activity. Nutritional support will also be important if issues of malabsorption arise.
Physical therapist: Low-impact physical activity is recommended to maintain overall strength and boost mood. The guidance of a physical therapist will be beneficial in helping you to avoid overexertion and overheating, which can trigger symptoms.
Psychiatrist/Psychologist/Counselor: A mental health professional supports the mental wellbeing of people living with SM and helps them navigate the burden of living with this chronic disease and its multiple symptoms.
Endocrinologist: Endocrinologists are doctors who specialize in hormones. In SM, they may provide testing and care if bone density is decreasing.
Other specialists will be consulted or added to your multidisciplinary team as needed.
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