I was diagnosed with systemic mastocytosis (SM) in the year 2000. It took many years to get the diagnosis, and when it was given to me, the doctors didn’t give me much information about it.
I left the doctor’s office with the name of the disease and a fear of the unknown. The doctors told me all about mast cell leukemia and other complications and stages the disease could take. They diagnosed me with SM at that time, but it took another 21 years for me to get a diagnosis of indolent SM.
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.
I went home scared to even try to search for the disease on my computer. It took months before I was brave enough. When I did, my fears worsened. I decided that I would live each day to the fullest and try my best not to worry about what could happen.
Read more about SM signs and symptoms
None of the doctors in my area had ever heard of ISM, so no one knew how to treat me. Eventually, it just came to be a part of me that I lived with daily. The flare-ups came all the time. Some days were better than others, but I was living in my own personal circumstances that I could not escape until I made the clear statement that I wanted to be sent somewhere out of state to see a specialist. This was in 2021.
I finally learned I had ISM, and the doctors there answered the questions I had at the time. I did not know enough about the disease itself to ask the right questions, but I left with more knowledge than I had when I arrived. I had been on sites searching for answers, but how did I know what information was correct? Some websites were there just for support, not answers.
A whole new world
Eventually I ended up on Rare Disease Advisor, where I found information at my fingertips I knew I could trust. I learned so much about what I was going through in all the articles written by patients just like me, as well as medical articles written by professionals. RDA eventually came up with the SM Companion site, and a whole new world opened up for me.
This site was for me. About me. And I was so thankful. I read every article and learned so much that it helps me cope daily. I know what to ask my doctors when I see them. I can finally breathe with relief that I am not alone in this. I would rather be alone in this so no one else would have to endure it, but alas, that cannot be. I just would love to get the word out to everyone who is living with SM that there is somewhere you can go to learn about what you are living with.
Don’t be like me in the beginning. Trying to outrun or hide from information even when it sounds bad is not the way to live. Learn all you can so you can be prepared and ready to ask the pertinent questions at your doctor appointments. Learn about what to do if you must go to the emergency room. Take control, and use every bit of knowledge available to you.
I finally understand my disease. I have come to terms with having ISM. Use the information at your fingertips to help manage your disease, and take control of your life again.
Sign up here to get the latest news, perspectives, and information about SM sent directly to your inbox. Registration is free and only takes a minute.
