Aplastic Anemia and MDS International Foundation

Aplastic Anemia and MDS International Foundation Fighting Bone Marrow Failure Diseases through Patient Support and Research -Aplastic Anemia, MDS, PNH
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The Aplastic Anemia & MDS International Foundation (AA&MDSIF) is the world's leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and other related bone marrow failure diseases. AA&MDSIF provides answers, support and hope to thousands of patients and their families around the world.

“Appreciate each little victory,” Jenny says.Even though Jenny had to have a second transplant, years after the first, s...
10/26/2025

“Appreciate each little victory,” Jenny says.
Even though Jenny had to have a second transplant, years after the first, she challenged herself and celebrated each day. Now she's studying medicine! Read her story: https://www.aamds.org/patient-chronicles/jenny-cape

And Leanne reminds us that MDS is a cruel disease:Dear MDS, I never knew you existed until you showed up and ripped my w...
10/25/2025

And Leanne reminds us that MDS is a cruel disease:
Dear MDS, I never knew you existed until you showed up and ripped my world apart. First time, with my husbands initial diagnosis and the second time, when you returned with a vengeance after what we thought was a successful bone marrow transplant and you came back worse than before. You then grew into an AML monster and took my husband from me and our two little boys. I hope to never see you again!

Week
Find out more about MDS here: https://www.aamds.org/mds

What would you say to MDS?Dear MDS, you were a nasty little thief who broke into my house some 3 years ago. We know you ...
10/25/2025

What would you say to MDS?

Dear MDS, you were a nasty little thief who broke into my house some 3 years ago. We know you had help - that house in its 6th decade looked OK from a distance, but hadn’t been maintained very well and the previously impenetrable fences, doors and windows were broken and easy to break through due to decades of neglect. I hadn’t realised you had already changed a few locks giving you such easy access/ ready for a total takeover! Even the crude but effective security system may have been silenced by recent medical interventions. As I watched and waited I knew you were gradually taking over. This year you even kept cutting off my power so I relied on the generosity of strangers to provide booster batteries every week or so to keep things running! Of course you weren’t working alone, you gave your new set of keys to your mates “Empy En” and “See Em Em Ell” . The latest ringleader goes by the name of “Aye Em Ell” Together you think you’ve won but now that we know your tricks we’ve called in “Transplants R us” who will zap you and your mates and everything you damaged. The house will really be wrecked in the process, but luckily I have a son who is an architect who happens to know exactly what the house should look like in intricate detail. He’s going to donate a solid week to lay out those plans and set up the perfect builders to restore the old house to its former glory! To all MDS sufferers, my best wishes and hopefully many of you don’t have his mates taking over as I did.
Thanks to Jon for sharing!

Thanks to Lori for sharing:Dear MDS, You are horrible! You came into my life in 2022. Made me get so many different chem...
10/25/2025

Thanks to Lori for sharing:
Dear MDS,
You are horrible! You came into my life in 2022. Made me get so many different chemotherapies to prepare my body for a stem cell transplant. You caused me to get so many blood transfusions. You kept me away from my family for 4 months. Then you went away only to come back at 6 months post transplant. This time you turned into AML. You made me go through the whole process again but this time there was even more chemo, full body irradiation, a stay in ICU and about 5 months from my family. You messed with my mental health and I am now extremely anxious about every bruise I get, every low platelet count and low ANC and every bone marrow biopsy. Because of you I’ve had to get 17 of those biopsies.
I am now 1 year and 7 months post transplant and you are GONE! Let’s stay that way please.

Translated from French:Cher MDS, (translation)The day I was diagnosed (July 10, 2012), I didn't know what was in store f...
10/25/2025

Translated from French:
Cher MDS, (translation)
The day I was diagnosed (July 10, 2012), I didn't know what was in store for me. I used to go over a hundred an hour. Every day I lived was not easy because besides being sick I had to rest...
You were the one who managed me until the day I decided to take you by the hand and tame you.
The girl i used to be, is not here anymore.
Many things in my life have changed. Bonding with my family, friends and especially work. Lets just say priorities have changed.
Since my remission in 2017 my health has come first. I listen to my body because if I don't, it puts me back in order.
You always leave me on guard because if one day I catch a virus or something according to the doctor we don't know how the bone marrow will react. But you can stay away because I'm doing great and I don't want to do this marathon again to get healthy.

Thanks to Nathalie for this quote!

10/25/2025

On World MDS Awareness day, we asked the MDS Community what they'd write to MDS. Here are some of their answers.
Follow us today for longer responses.

10/23/2025

"You're not so straightforward. We found blood clots in your liver and spleen."
After being in, out, and in the Emergency Room, Shane finally learned his diagnosis: PNH, or Paryoxysmal Nocturnal Hemoglobinuria.
Listen to the podcast episode here: https://www.aamds.org/podcast/treatment-pnh-shanes-story or find AAMDSIF Podcast for Patients on your favorite platform.

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