The MDS Foundation proudly partners with the following organizations
The MDS Foundation proudly partners with the following organizations
Phone within the US
1-(800)-637-0839Outside the US only
1-(609)-298-1035Address
The MDS Foundation
228 Park Ave S
PMB 118983
New York
NY 10003-1502
The MDS Foundation is a global nonprofit 501(c)(3) advocacy organization (EIN 22-3283911), supporting patients, families, and healthcare providers in the fields of MDS and related diseases for over 30 years.
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One Voice Inspires, Many Voices Transform
Patient
In 2021 my internist, who I have been seeing for 15 years, suggested that I see a hematologist because he was concerned about my low RBCs. He referred me to Dr Raphael at NYU Perlmutter. At the time I was asymptomatic but lab tests and a bone marrow aspiration indicated that I had low grade MDS. I saw Dr Raphael every four months for monitoring until June of 2025. At that time I was very short of breath and my hemoglobin was 8.9. So I had another bone marrow biopsy and was started on Aranesp. Fortunately the Aranesp worked and with monthly injections my hemoglobin has increased to 10.2 for the last 4 months.
The last 4 months has been very difficult for me. I guess the MDS diagnosis wasn't real to me because it wasn't interfering with my life. Now, I am short of breath if I walk even a short distance and especially if I climb stairs. We went on a riverboat cruise last week and I was not able to participate in several of the excursions. I cannot believe this is happening to me. I have been very active my whole life and I am really embarrassed when my inabilities are obvious to others.
Although it probably isn't a good idea, I spend a lot of time searching the web for information about MDS and it seems to me that there is not a lot of good news about this disease. I am also becoming more frustrated with my lack of energy and worried about the future. I'm concerned that lately I'm sad and lack motivation, which is not at all like I used to describe myself.
One factor which I think is contributing to my feeling down is not having anyone I can talk to. I have a wonderful family and a very close friend, I do not want them to worry about me so I avoid talking about this with them. My husband is wonderful but he changes the subject or encourages me to believe there will be a cure. I think I'd really benefit from being involved in a support group. NYU does not offer support services that I am aware of.
I have not been diagnosed long enough to give advice to others. I hope to become involved with the MDS Exchange Community
Your story matters. If you'd like to contribute your experience with MDS and inspire others in our community, we invite you to share. Your voice can make a meaningful impact and offer support to those on a similar journey.
Discover genuine accounts from individuals navigating MDS. These stories reflect the real challenges and strengths within our community.
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 …
Patient
I am a retired teacher, married ,75 years old. I am recently diagnoised and just trying to learn to navigate through my MDS diagnoises. i look forward to having a network of future friends.
Patient
Two years ago in September (2023) I became very ill. I went to Urgent Care with a bad cough and just feeling bad. They diagnosed me with Bronchitis and gave me a prescription and sent me on my way. …
