Viewing 6 posts - 1 through 6 (of 6 total)
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  • #15353
    Tito Oye
    Keymaster

    I remember once my mum was talking to me about potentially travelling to Maryland, USA to have a bone marrow transplant.

    She read about a clinical trial that was going on but the procedure was not available in the UK at the time.

    Have you considered doing anything similar?

    #15574
    Des Gab
    Participant

    I am a mum to a lovely young boy age 4. I am currently considering travelling to India from the UK to have bone marrow transplant. The Doctor is well known and has successfully done the procedure for 2 families that I know. His Doctor here in the UK says he does not qualify for a transplant in the NHS because he is a ‘well child’. I have questioned what that means, cos he has got sickle cell and has to take medication everyday with crisis sometimes. I guess what she means is that she does not see him in the hospital with complications.

    I have made all the enquiries and just waiting for the right time. His older brother is a very good match. I know there are risks but I would rather go through the risks than watch my boy go through life with uncertainties.

     

    #15580
    Rodney McNary
    Participant

    Never went to another country. However, I did have an encounter with the National Institutes of Health. Maryland, USA. Attempting to undergo, a stem-cell, sibling match. My brother was my match. However, I ran into a wall when asked to have a C-statin test which gets at the root function of your kidney’s. According to their test standard, your kidney function had to be at a 60. Unfortunately, I didn’t make the cut. They did not want to risk throwing me into partial dialysis, or permanent dialysis; so they refused to do it.  Soooo close to getting a chance a life-changing experience !!  Sickle Cell Disease is a terrible enemy and it Sucks !!!!!!

    #15608
    Tito Oye
    Keymaster

    Wishing you and your family all the best Des! ❤️

    #15609
    Tito Oye
    Keymaster

    Ahh I can only imagine the frustration Rodney. Do you know if they would still offer you the procedure if your kidney function improves?

    #15658
    Kassem Banawer
    Participant

    No, i didn’t travel to any other country for treatments, but i’m just following the latest news about new medications or new cure like gene therapy.

Viewing 6 posts - 1 through 6 (of 6 total)
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