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My husband was diagnosed with Moyamoya at the age of 22....

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Guest

My husband was diagnosed with Moyamoya at the age of 22. Over the years he had many strokes. He died age 43 of extensive arterial problems. My 2 sons have been diagnosed with carotid artery occlusions and have both suffered strokes age 17 and 22 respectivley. I worry for their future.

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1 like, 4 replies

4 Replies

  • kristina1202
    kristina1202 Guest

    Posted

    HI,   My 7yr old daughter has Moyamoya Disease. I live in the US, please email me if you need more information on it. Hopefully you know more by now and your sons have had surgery to fix the arteries because this is the only treatment that is available and proven sucessful. 

    Kristina

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  • Biddledeboo
    Biddledeboo Guest

    Posted

    Hi,

    I'm so sorry to hear about your husband and the trouble your children are going through.

    My partner just had a stroke in March this year and was diagnosed with Moya Moya in April he just had left side surgery in July. He is still in hospital as the occupational therapy are not happy with his cognitive skills.

    Have your children been tested for MM? I want to get our daughter scanned who is 5,she sometimes tells me she feels dizzy and her eyes feel weird and I keep getting paranoid.

    I wish your sons good health smile

    • kristina1202
      kristina1202 Biddledeboo

      Posted

      Hi,

      I am so sorry about your husbands diagnosis. I hope everything works out for him and he has a speedy recovery! As for your daughter, I would definitely get her tested. Moyamoya can be hereditary. I have met quite a few families with more then one that has Moyamoya including mine. My 9yr of daughter and her uncle (dads side) have it and we believe that her grandfather (dads father) passed away from undiagnosed MM last September. I would take her to neurologist or just have your family doctor order an MRI/MRA to make sure. Those two tests along with an angiogram are the only tests that can diagnose Moyamoya, a CAT scan will not. Good luck!

    • Biddledeboo
      Biddledeboo kristina1202

      Posted

      Thanks for your reply I had never heard of MM before my partner was diagnosed. It's nice to chat on Facebook also with other people in the group and get advise on this.

      I'm just waiting to hear from the surgeon to see if he will organise this for my daughter.

      I did ask at our doctors but they said they know nothing on MM so wouldn't be able to.

      Good luck with everything too 😀

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