I see the posts too. Someone shares a gene therapy or bone marrow transplant recipient success story.
The words "sickle cell patient cured" spreads fast.
Understandably - it's huge news for many people. And not long after, I'll get the message: "Have you seen this? What do you think?"
I live with sickle cell myself and having studied medicine many people are interested in my thoughts on curative therapies.
In July 2026 Casgevy, the CRISPR-based gene editing for sickle cell – just had its approval expanded to children as young as 2 years old.
As time passes more and more people will find themselves facing the very real question of should I get curative treatment?
So allow me to share some food for thought.
(BTW If it's just information on the actual procedures you're looking for, you can find this explained clearly in my Ebook 'Sickle Cell Treatment Guide')
For now lets leave the access issues out and just think theoretically...
You've been offered either gene therapy or bone marrow transplant free of charge. No insurance, no gofundme's, no referral centre waitlist.
What are you gonna do? What decision are you going to make? What's your thinking?
Lets start with the aspect common to both procedures which is going to heavily influence your decision. Chemotherapy.
This is used to wipe out your existing stem cells. That means risk of infection, a rough side effect profile, weeks of isolation, and a hit to fertility.
It's a genuinely grim experience to go through, there's no getting around that. But for me, this comes down to accepting short-term, temporary pain for long-term gain.
What I envision that gain to be is a life free from the ever looming threat of sickle cell crisis pain.
Not having to hold myself back from doing things that might trigger pain. Not having to drown myself in water just get through everyday life. An end to the many struggles of living with sickle cell.
And you may say that's cool and all but what if the treatment fails?
Yes there's a very small chance of failure. It's happened to others and it could happen to you.
But this is where your mindset determines your life.
This is where you have to ask yourself what does 'failure' actually mean to you in the grand scheme of your life?
Sit with that for a few minutes.
For me it always leads to feeling the same emotion... Regret.
Regret that there was something I could have done to improve my life by +100, but I didn't because I was afraid to make it worse by -10.
I don't want to sit on my death bed in future thinking, damn, the math ain't mathing!
The truth is there's no universal right answer here.
What's a '+100' for me might only be a '+20' for you. What feels like an acceptable risk to me might feel reckless to you. That's not a contradiction. That's just two different people living two different versions of sickle cell.
So the real question isn't "would you get the cure." It's this:
When you picture your life 20 years from now - one where you did nothing, and one where you took the leap - which one are you actually more afraid of?
Sit with that. You don't need an answer today. But one day, you will. And when the time comes I'd rather you've already done the thinking than be doing it for the first time under pressure.
Let me know where your head's at. Reply and tell me, regret of inaction, or fear of the unknown? Which one scares you more?
Stay Healthy,
Lewis
