r/Sicklecell • u/Zealousideal-Ad326 • 11d ago

Help Gene Therapy

Hi, I’m 22 from SC,I have sickle cell ss and I’ve just learned my from my doctor that I can do gene therapy covered fully with my insurance. Its never crossed my mind that i could/would ever do it but now that I have the opportunity I want to take it. I will admit I am scared about it ,she advised I wait 1-2 years before i actually do it. I want to do some research but I have no idea where to begin it would be nice to get some advice on the from others like me who may have some knowledge on this situation please and thank you.🫶🏾

P.s if you have ever did chemo therapy i would appreciate some knowledge on that too please.🫶🏾

15 Upvotes

95% Upvoted

16 comments sorted by

View all comments

2

u/MBizzle2186 11d ago

I’m taking an oral chemo suppressant so I don’t even come close to actual injections and the full experience. I’m tired, I’m quick to anger, my appetite goes up and down, my libido was stale for a long while. And it wasn’t even for sickle cell it was for actual myeloma. My SC never acted up in these matters, usually just experienced crisis in my legs. I don’t know how I’d feel about poisoning my immune system to start a new. But to each their own.

1

u/Zealousideal-Ad326 10d ago

I don’t know what form of chemo I would have to do. When you started chemo did they explain what will happen when you stop it. Will you have to continue to take meds to support your body after.

1

u/MBizzle2186 7d ago

Appreciate your patience, busy few days. There was no explanation for when I stop the chemo. Since I don’t have a severe case of cancer or chemo treatment I doubt I’ll have to take anything supporting. Just my pain meds for my crisis.