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MDS single lineage dysplasia (Platlets)

Home forums Patient Message Board MDS single lineage dysplasia (Platlets)

This topic contains 3 replies, has 4 voices, and was last updated by  Michael 3 months ago.

Viewing 4 posts - 1 through 4 (of 4 total)
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  • #48689

    ask4angels
    Participant

    My husband has just been diagnosed with MDS. Please give us your opinion on the BEST experts and facilities to go to within the US. We appreciate any and all feedback. This is overwhelming…

    We are celebrating our 42nd anniversary on the 19th. Alan is 67 and his MDS is from over exposure to radiation from his job at a nuclear power plant. Lineman of 42 years…

    Thank you, Patty & Alan

    #48692

    tam
    Participant

    Here’s my response to an earlier post.

    For low platelets you might want to try organic dry papaya leaf. I buy 1 pound bags of organic leaves online from Starwest Botanicals, but there are other retailers. We buy paper tea bags and scoop a tablespoon of dry leaves in each bag and staple shut. Steep the papaya tea bag in hot water for 5-6 minutes. It may help. There is research showing that papaya can increase platelets. I have been drinking one cup per day for five years and my platelets have increased from where they were when I started. Give it a try — it certainly won’t hurt. I have read that two cups per day is completely safe. Good luck.

    #48693

    Rita Knopick
    Participant

    Hello Patty,

    I firmly recommend a MDS Center of Excellence that is closest to where you live. My husband has high risk MDS and we went to Strong Memorial Hospital in Rochester NY as that was the center closest to where we live in NE Pa. We are very thankful that we went there and go a second opinion. God Bless.

    #48695

    Michael
    Participant

    Agree strongly with Rita. Use this site to find the Center of Excellence closest to you. I travel 2.5 hrs each way to a Center in NYC and have an excellent MDS expert overseeing my care in addition to my local hematologist.

    Best Wishes

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