Gene therapy is one of the most exciting developments we’ve seen in sickle cell treatment… but I think we also need to talk honestly about what it actually involves.
It isn’t simply “get gene therapy and you’re cured”.
Your own stem cells have to be collected, modified, returned to you — and before that happens, you undergo intensive chemotherapy to prepare your bone marrow.
There can be weeks in hospital, a long recovery, fertility considerations, side effects, strict eligibility criteria and long-term follow-up.
And importantly: not everybody with sickle cell currently qualifies or has access.
So YES, this is incredible progress. 👏🏾🧬
But when we talk about gene therapy, we also need to understand why somebody living with sickle cell can’t necessarily just “go and get it”.
Innovation AND informed conversation. 🤎
#sicklecellawareness #health #genetherapy #disability #woman
a day agokingblvza
hydroxycarbamide or hydroxyurea is also a low form of chemotherapy. Something doctors forget to mention to parents before they put kids with Sickle Cell on it.
a day agoniabadia1
My daughter has gone through a bone marrow transplant and my son was her donor! She's been doing well, but she still has trait like my son, so she's still being watched by her transplant doctors! It was NOT an easy process! She went through chemo, missed school, risk for infections, etc. Let's not talk about the strain it can have on a family unit! So when people say, "just go get cured," to other warriors, it's very insensitive! I have stories for days about this process!
2 days agonourahnnnourah
And guess what, it makes your fetal globulin works not the adult one, as it is easier to switch it on than to change the beta mutation ... this makes it not easy and unknown long-term effects.
2 days agoaguas4682
Finally someone said it in the most easiest way possible because as a person living with sickle cell anaemia I’ve experienced such from friends and relatives who tell you “but sickle cell has a cure,go get it”as if it’s just a walk in the park or something 😫
3 days agoliquidejoe
Great content. ❤️ I love the way you put it but people don’t fully understand. I was one of the first people that took part to the Gene Therapy trials. 6yrs in but like you say there’s a lot we don’t know. Does it work? Yes. It’s a personal decision and it should be thought 💭 about carefully. 💜
3 days agonatchi_valentim
You all ,how do you deal with this yellow eyes becaouuuuse its messing up my social life 😪
3 days agonatchi_valentim
You got a chronic condition,you den discover theres cure, but you need 1.6m to be cured, but then again you might not qualify because, you above 12 years of age and if you do ,you not sure you will make it becaouuuuse waaaat
3 days agobeautifulbiha
Been telling people this the doctor say you may get so sick you may not even survive its not real enough for me I told them ill pass I have 3 kids I cant take that big of a risk make another cure
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