Share Your MDS Story

Bruising was the first visual sign, and next was extreme fatigue.  Just not feeling my normal self.  Bone marrow test revealed MDS with 5Q minus syndrome.  I turned 70 in February of this 2025, and diagnosed with MDS one month later.   So far, we are keeping close tabs on my hemoglobin levels. I feel it waxs and wans because I will have good days and then bad days.  So far, we are not doing any medication because hemoglobin level increased from 9.2 to 10.2 somehow I don’t know.  Anyway, we are not doing anything at this point.  My family doctor started me on Remeron because I was having difficulty sleeping, causing me to be irritable and more fatigued.  The more I’m learning the more I know that it’s rare and not much as known.  I’d be interested in learning more through the foundation and with other patients.