Living with a rare chronic disease such as systemic mastocytosis (SM) can be isolating. Talking with people who have more experience living with the disease can help. By joining a support group, you will have the opportunity to ask questions, share your challenges and ask for advice — and with time, you may even be able to give back to the SM patient community.
Why are support groups important in SM?
At times you may feel that despite their best efforts, your friends and family can’t understand your daily SM challenges. There’s a good chance you had never heard of the disease before your diagnosis, and that you are learning about your triggers and how to manage your symptoms through trial and error. You may be spending a lot of time researching and learning about the disease on your own. It can all feel lonely at times.
Finding a support group of others living with SM can provide a valuable safe place where you can discuss shared experiences, learn from each other and feel like part of a community. For many patients, the emotional and practical support that these groups provide is invaluable.
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What kind of support groups are available?
There are both online and in-person groups for people living SM and other mast cell diseases, which offer a mix of up-to-date medical information, tips for living well and shared experiences. Many groups have a more specific focus, such as women-only groups. Some groups welcome family and friends of those living with SM, while others offer a space just for patients.
Your location will play a large part in which format you choose: most patients won’t be lucky enough to have an in-person group within a reasonable distance, but you can attend a virtual support group from anywhere. If you do have an in-person group nearby, another aspect to consider is whether or not you feel comfortable leaving your familiar environment to attend a local group and potentially run the risk of triggering your SM symptoms.
How to find systemic mastocytosis support groups
Your healthcare team is the best place to start when looking for an SM support group, especially if you’re hoping to find a physical, in-person community. They will have the most experience with the patient population in your area. Your hospital may also organize events focused on mast cell disease or rare disease in general that can help provide community and connection.
Some online research will bring up The Mast Cell Disease Society (TMS), which supports forums, virtual meetups a Facebook support group. UK Masto is another online option that offers patient support and advocacy, web forums, information brochures and personal support to SM patients and their families over the phone.
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