Advocacy

Though I have SM, I strive to give hope to others going through the same thing as me. Some days, it’s easier than others.

Anyone living with ISM should go immediately for a bone density scan to make sure they do not have the beginning stages of osteoporosis.

Living with systemic mastocytosis means dealing with high deductibles for health insurance when Jan. 1 arrives.

I hope that I can figure out a way to lose the 30 to 40 pounds that the doctors recommend for managing my systemic mastocytosis.

I have learned over the years not to let symptoms worsen before I ask for help and to roll with the punches.

I did not know I had liver problems related to my systemic mastocytosis. But the one thing I do know is that I cannot just give up.

I am experiencing more SM symptoms, but I feel like I did before I was diagnosed, when no one listened and I had to fight for a diagnosis.

I recently experienced SM complications that led to a trip to the emergency room after my doctors failed to conduct necessary tests.

Even though my dog is not an official emotional support animal, he has changed both my life and my symptom burden for the better.

Living with a rare disease is hard enough without the mental anguish that comes with it, but what’s most important is that I keep moving forward.