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.
© 2024 MDS Foundation. All rights reserved.
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One Voice Inspires, Many Voices Transform
Patient
I was surprised when my general practicioner left me a message saying he wanted to speak with me. When we did speak, he said it looked like I was anemic - he ordered another blood testvto confitm. Sure enough, megalobladtic anemia. Several blood tests later and we were clueless as to a cause. Referral to a hematologist…
After ruling out many potential causes with a battery of more tests, he ordered a marrow biopsy. Sure enough, 5q- MDS. I was 55 and he was saying maybe 10 more years… Maybe more… Hard to say with so few cases of such young people dianosed in the literature.
I took it fairly hard. Now knowing the progression - wait, start meds, get transfusions, then transplant - I continued on wondering how long I could sustsin my active lifestyle (mountaineering, white-water rafting, etc). I decided to retire even though I wad very uncertain I could afford it financially. That decision took me 2 years to finally make.
My hgb levels are now 7.7 and my doc says it is time to start Revlimid. We’ll see where it goes ftom here…
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
From a young age, my parents instilled in me the importance of easing the burdens of others and leaving the world better than I found it. That early lesson shaped who I am and why I have always been d…
Patient
In April 2024, while vacationing with my wife and daughter in Norway, I received a life-changing call from my hematologist-oncologist at MGH: I had been diagnosed with MDS. Having faced Non-Hodgkin’s …
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.
