Viewing 13 posts - 1 through 13 (of 13 total)
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  • #14477
    Michael Quadri
    Moderator

    I was recently informed that there is a “cure” for sickle cell, which is a bone marrow transplant, but I wanted to how you feel about it and if you consider it a cure.

    #17302
    Mary Kaye DiUbaldo
    Participant

    Hi Michael,

    I work for There Goes My Hero, a small community based nonprofit who helps get people registered on the bone marrow registry for people with blood cancer and other blood disorders like Sickle Cell and various anemias. I know they are doing wonderful things with BMT and I understand there have been cures with a bmt. It is of course of to your physician to determine the best course of action. I can tell you that it is no longer the horrible surgery that people talk about back in the day. 80% of the time it is a IV stem cell transfer. No pain and like giving blood except that they put your blood back in you. We have an initiative called Color the Registry to get more people of color on the registry for bmt when they need it.

    #17304
    Stephanie Baker
    Participant

    Hi, I am now in the talks for having BMT.  The doctor I’m seeing does BMT, gene therapy and CRISPR procedures and we opted for BMT b/c it is the one with the most success rate for curing SCD.  The other two are in it’s developmental stages and poses issues later in life (causing cancer) and not enough research can be done to definitively know how it will work long term.  Since I have a 21 y/o, a 13 y/o and 4 siblings that could be potential donors, they are or will test each one to see who is the best match for me.  The oncologist feels like my oldest son will be the likely donor.  This is the stage that I’m at right now.  I am 50 y/o and all of my siblings are older than me.  I’m a bit worried/nervous about the cons, 1)- will my body fight against my new cells once they are transferred causing me to be very vulnerable immune-wise? 2)-losing all of my hair b/c of the chemo treatments, 3)-possible organ damage.  If those factors were eliminated, there would be no worries.

    #17305
    Adama Balla
    Participant

    I would like to try it for my son

    #17309
    Tito Oye
    Keymaster

    Hi Mary,

    Thank you for your comment. It is so good to hear that it is becoming a lot more of a seamless process. Hopefully it is something that more and more people have access to in the near future!

    #17310
    Chris Lundy
    Participant

    I have gone through the BMT process and would love to connect with those considering it. Feel free to contact me.

    #17311
    Stephanie Baker
    Participant

    Hi Chris,

    I’d like to know more about BMT.  I’m being told it will take 100 days (I will be in Nashville, TN for the procedure), I will undergo chemo and I want to know how hard was that for you?

    #17316
    Michael Quadri
    Moderator

    Hi Stephanie,

    We’re wishing you all the best with this process! Hopefully, you’ll find a suitable match within your family.

    I can imagine the worry when it comes to the potential side effects and risks. Please do connect with other people in the forum, such as Chris, who have gone through this before so you can get a better understanding of what the experience was like for them.

    #17317
    Tito Oye
    Keymaster

    Hi Chris, we’d love to hear more about the experience and what it was like for you! Thank you for offering your time to speak with other people who may be considering the same thing!

    #17331
    Valerie Bailey
    Participant

    Hi! I have considered a bone transplant to the point that I went to National Institute of Health in Maryland to try to get into their research program. I was tested and everything but found out that my only sibling is not a match. My two children are willing but are not the best candidates. I still entertain the idea when I hear about it but none of my doctors seem optimistic. I am 56 years old and they think it is too risky to consider.

    #17341
    Faith O.
    Participant

    Good day all. This news is a cherry one. @Mary Kaye and @Chris Lundy, I am interested. Kindly create an opportunity for me to private chat you. Thanks. Faith O.

    #17344
    Mary Kaye DiUbaldo
    Participant

    @FaithO please feel free to message me so we can exchange contact information. I am in Batimore but am not sure where you are so I am not sure if there is a time difference. I a happy to tell you what I know about BMT.

     

    MKD

    #17356
    Chris Lundy
    Participant

    Please feel free to reach out to me! You can direct message me.

Viewing 13 posts - 1 through 13 (of 13 total)
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