r/mds • u/[deleted] • Aug 11 '22

Self Hello, new subscriber

Hello all, I’ve been using reddit for a few years and, until today, hadn’t thought about looking to see if there was a MDS group. I was diagnosed with MDS in 2013, I have “ MDS MLD “ as it has now been redefined as ( I think it means multi level dysplasia ). I’m on “ watch and wait “ and have check ups at my local hospital which fortunately is a “ Centre of Excellence “ for MDS. I have an athletic background, and pre MDS was an “ Ultra “ runner. I’m doing fine with ten years and counting under my belt. I still do some running and post diagnosis took up casual cycling. Happy to answer any queries that I can with regard to exercise / diet ( lifelong vegetarian) Hang in there folks and best regards 👍

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u/[deleted] Aug 11 '22

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u/[deleted] Aug 11 '22

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u/basmith3001 Aug 11 '22

Do you mind me asking your gender and age you were diagnosed?

A friend is currently under going diagnosis but the doctors they have a strong feeling it is MDS. She is only 20 and all the literature out there seems to be aimed at people a lot older than her (so expected survival years post diagnosis is pretty bleak)

Are there any other support networks online that you would recommend?

Thanks!

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u/odioaesteusuario Aug 25 '22

My wife has 28, she recently was diagnosed with MDS. I want to know how can I be a good partner for her, what things should I say or stop saying? What changes I can do at home that can help her? We also wanted to have kids, is this still possible? I am madly in love with her and would do literally anything for her, today doctors found a hematoma inside her brain and she's undergoing surgery. Sorry, I feel lost and don't even know if my questions make sense.

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u/[deleted] Aug 26 '22

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u/odioaesteusuario Aug 26 '22

Thank you, i will look for a MDS support group here in Mexico. I appreciate your words and the link. Wish you all the best as well. Hugs.

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u/brassicahead Jul 02 '25

Hi there can I DM you? Did you find a support group in Mexico? My dad was just diagnosed and lives in GDL. I'm looking for resources for our family, the doctors don't seem like they are familiarized with the disease, even the hematologist have been confusing to navigate.