Advanced systemic mastocytosis can be emotionally challenging, especially when symptoms like pain or fatigue are persistent.
“Depression or other mood disorders aren’t uncommon with advanced systemic mastocytosis. They have what is basically a rare orphan hematologic disease that’s very uncommon, and it’s not easy to find specialists,” says Gotlib.
This can be a chronic, debilitating, painful condition with very significant impacts on quality of life, he says.
“People often have no appetite, lose weight, and have fatigue along with all the other complications that can come with the disease,” says Gotlib.
People with advanced systemic mastocytosis should discuss any pain or mood issues with their healthcare team so that they can get the treatment they need to have the best quality of life possible, says Gotlib.
Support groups, both in-person and online, provide a sense of community and can be a valuable resource for coping strategies, emotional support, and information about new treatments. The Leukemia and Lymphoma Society has an online tool to locate support groups in your community.
The Takeaway
- Advanced systemic mastocytosis is a rare and serious condition in which mast cells grow uncontrollably and cause damage to various organs.
- Treatment goals for advanced systemic mastocytosis focus on managing symptoms, preventing organ damage, and improving quality of life, with hematopoietic cell transplantation being the only potential cure.
- A Center of Excellence and a provider familiar with advanced systemic mastocytosis are important to ensure you receive the best possible treatment.