Share Your MDS Story

For many years, I’ve struggled with fatigue, but I always chalked it up to being a busy mom with young children. It wasn’t until later that I realized this exhaustion was part of something much bigger.

After my third child was born, and while trying for baby number four I began experiencing multiple miscarriages. During my fourth pregnancy, my doctors recommended genetic testing. The results showed something unexpected: a 5q deletion in my DNA. That result led me to a geneticist, who then referred me to an oncologist/hematologist.

Unfortunately, that first doctor dismissed my concerns for nearly a year. Due to only being twenty-eight years old at the time, she didn’t think it was possible for me to have anything cancer related happening to me. I knew something wasn’t right — my blood tests consistently showed macrocytosis (high MCV). I finally advocated for myself and insisted on a bone marrow biopsy. That’s when we discovered the truth: I had Myelodysplastic Syndrome (MDS) with multilineage dysplasia and a 5q deletion.

Looking back, my path to diagnosis was long and frustrating. I had been living with unexplained fatigue for years and endured multiple miscarriages. It was incredibly discouraging to feel unheard by a doctor, but I’m proud that I pushed for the biopsy that finally gave me answers.

So far, I have been very fortunate to remain low risk, which means I haven’t needed heavy treatments. My care has focused on iron infusions and vitamin B12 injections to help support my blood counts and energy.

What has helped me most is my support system — my family, who gives me the strength to keep going, and the MDS Foundation community, which has provided encouragement and knowledge.

MDS has changed the way I see my health and my future. It’s taught me to listen to my body, to advocate for myself, and to be proactive in my care. While I still experience fatigue and symptoms that can be overwhelming at times, I’m grateful to know what I’m facing so I can manage it instead of living in uncertainty.

Trust yourself and your instincts. If you feel something isn’t right, don’t give up until you get answers. Advocate for yourself — you know your body better than anyone. And when the diagnosis feels heavy, know that you’re not alone. There is a whole community out there ready to support you.

I found the MDS Foundation right after my bone marrow biopsy in February of this year. I was scared and overwhelmed at the time, but the Foundation gave me a wealth of information and resources that made me feel less alone. It gave me hope, and it gave me the tools I needed to better understand my condition.