The MDS Foundation proudly partners with the following organizations
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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.
© 2024 MDS Foundation. All rights reserved.
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
Discover genuine accounts from individuals navigating MDS. These stories reflect the real challenges and strengths within our community.
Patient
I am 76 living with MDS.I also have other medical issues. I was told Over a period of time I was Anemic. I wanted to find out why! Thats when they found MDS. My mother’s mother was 80 when she was…
Patient
i have been living fullfiled life untill I have not been diagnosed mds in December 2024. My personal fight and new challenges have started there finding out new disease unkown before MDS. I have start…
Professional
I am a nurse practitioner and researcher. For 32 years, I have worked as an oncology nurse practitioner, focused on the care of patients with cancers involving the bone marrow. As a student nurse, I t…
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.