Many patients battle symptoms for months or even years before they are diagnosed with systemic mastocytosis (SM). Finally having an explanation can be a source of relief — but it’s also the start of many questions about what you are dealing with and what it will mean for your future.
Ask questions about the disease
SM may be a challenge for individuals outside the medical world to gain a firm grasp of: it can have many different symptoms, and there are many different variations of the disease. For example, there are five subtypes of SM, each with their own characteristics, prognosis and treatment guidelines.
First, it is important that you are clear regarding the specific subtype of SM you have been diagnosed with. This is because non-aggressive SM subtypes are managed very differently than aggressive forms of the disorder.
Read more about SM testing and diagnosis
During face-to-face consultations, it is important that you take your time and ask about any aspects of the disease that you do not understand. For example, you probably want to know about how this disease impacts daily living, as well as how likely the disease is to progress and the typical life expectancy for individuals with your condition. Asking these hard-hitting questions will give you a more complete picture of your SM diagnosis. Don’t be afraid to ask your doctor to define any terms you don’t know, or to repeat any information that’s difficult to understand.
Ask about treatment
You will likely be prescribed new medications. It isn’t necessary to become an expert on the drugs you take, but it is important to have a good understanding of how they work and why they are important. As with your diagnosis, ask questions about anything that isn’t clear.
You must, of course, know how to take them, and how frequently. Another aspect of equal importance is knowing the potential side effects of different therapies. If, for example, you are given a drug that is prone to cause gastrointestinal disturbances, it may be something you might want to watch out for while at a business meeting.
Lifestyle changes
Because SM is incurable and can adversely impact various systems in the body, you’ll probably need to adjust your lifestyle to ensure that your health stays at its best. Ask what healthy habits you should focus on, and what you should avoid. You may want to ask your doctor to help you compile a comprehensive list of potential symptom triggers to avoid. Ask your doctor how to recognize the signs of anaphylaxis, as well as when — and how — to use an epinephrine autoinjector. This knowledge can potentially be life-saving.
The changes in lifestyle that are often the most distressing are when patients can no longer engage in employment or social activities due to advancements in their disease. This can indeed be a devastating blow. However, there are many good community-based support groups that you can be a part of to make the next phase of your journey both life-enhancing and rewarding. Ask you doctor for help finding these groups, and other sources of support.
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