November 3, 2021 at 9:00 am #14477Michael QuadriModerator
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.March 3, 2022 at 9:56 am #17302Mary Kaye DiUbaldoParticipant
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.March 8, 2022 at 4:43 pm #17304Stephanie BakerParticipant
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.March 11, 2022 at 11:34 am #17305Adama BallaParticipant
I would like to try it for my sonMarch 18, 2022 at 9:56 am #17309Tito OyeKeymaster
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!March 21, 2022 at 9:52 am #17310Chris LundyParticipant
I have gone through the BMT process and would love to connect with those considering it. Feel free to contact me.March 21, 2022 at 11:02 am #17311Stephanie BakerParticipant
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?March 24, 2022 at 2:40 am #17316Michael QuadriModerator
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.March 24, 2022 at 2:40 am #17317Tito OyeKeymaster
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!April 15, 2022 at 9:46 am #17331Valerie BaileyParticipant
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.April 17, 2022 at 4:57 pm #17341Faith 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.April 19, 2022 at 2:10 pm #17344Mary Kaye DiUbaldoParticipant
@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.
MKDApril 25, 2022 at 8:26 am #17356Chris LundyParticipant
Please feel free to reach out to me! You can direct message me.
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