“Even when we cannot see what someone is going through, we can always offer empathy, understanding, and support.”
Unnoticeable. Unmistakable.
Finding answers after years of unexplained symptoms
My name is Roseani. I am from Puerto Rico, a mother of twin boys, and I was diagnosed with systemic mastocytosis three years ago.
For years, I experienced symptoms I could not understand. I had rashes all over my body, reactions to certain foods and things I touched, and episodes of itching so severe that I would scratch my skin until it became wounded. Stress was one of my most noticeable triggers. Food dyes caused significant reactions, and even being near gasoline could affect me.
Things began to make sense when I visited a dermatologist seeking relief from the itching. After performing several tests, the dermatologist referred me to a hematologist-oncologist. Eventually, a bone marrow biopsy confirmed my diagnosis of systemic mastocytosis.
Living with mastocytosis, one day at a time
Since then, I have learned that living with this condition means facing both good days and very difficult ones. Some days, I can barely get out of bed. On other days, I experience hours of diarrhea or severe headaches. My condition may be invisible to others, but its impact on my daily life is very real.
Today, I do my best to avoid my triggers, including sun exposure and certain foods. My treatment includes several daily antihistamines and supplements as part of my personal care routine. I have learned to listen to my body, adapt to its needs, and take life one day at a time.
My faith in God is a fundamental part of this journey. He gives me strength and hope to keep going, even on the most difficult days.
I am sharing my story to raise awareness and remind others that behind every diagnosis is a person, a family, and a story that deserves to be heard. Even when we cannot see what someone is going through, we can always offer empathy, understanding, and support.
To everyone else living with mastocytosis: you are not alone. Let’s continue raising awareness, sharing our experiences, and supporting one another. One day at a time, with faith and hope. ❤️🙏🏼
Every story matters. Share yours.
Like Roseani, many people living with mastocytosis, MCAS and other mast cell diseases face challenges that others may not see or understand.
By sharing your experience, you can help raise awareness, build understanding and remind others that they are not alone.
Your story deserves to be heard.
