Share Your MDS Story

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Lynn's Story

Patient

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.

Aileen's Story

Patient Advocate

My name is Aileen, and I am a first generation American. Growing up, I witnessed firsthand how hard my parents worked to provide opportunities and a better life for our family. Their sacrifices shaped…

Lea's Story

Patient Advocate

Starting out, I thought I knew what I wanted and where I wanted to be. However, life has a way of shaping, or in my case, reshaping, your path as you walk it. From the time I was young, I felt called …

Barbara's Story

Patient

I am newly diagnosed with MDS. My platelet count has been low since March of this year. I had a bone marrow biopsy which indicated scarring of the marrow. I am a double lung transplant. My 8th lungave…