How People With Sickle Cell Really Feel About “The Sickle Cell Cure”
Anyone who suffers with Sickle Cell Anemia is used to being asked these questions: “Is there a cure?” – “Have you heard about the sickle cell cure in the news?” etc… And while its nice that people want to see you recover from your lifelong chronic illness, we all know that it’s not as straight forward as that.
Not only are the current cures making the news rare and not widely available, but they’re also risky to replicate on a large scale. One thing that should be understood about sickle cell patients is that not all of us function the same.
Yes, we all experience pain and fatigue, but our bodies still function in unique ways. We have different allergies, our bodies may develop slower or faster, our immune systems may be weaker or stronger. No two Sickle Cell patients have the same body makeup. It’s only the symptoms of the illness that remain the same, but we can be affected by them in different ways.
Not only does this mean that some Sickle Cell sufferers are happy to manage their pain without a cure, but it could also mean that these alleged cures could be deadly to some Sickle Cell sufferers. What works for one sufferer, may seriously complicate another.
“I knew four friends who had the bone marrow transplant (some had leukaemia, some had sickle cell) and only one out of my four friends survived the transplant” – MoonlightDesire from the Sickle Cell Warriors Discord Channel
And then there’s the issue of mental health, which I love to highlight in my Sickle Cell Diaries. Living with Sickle Cell (or any chronic disease) has longterm psychological issues. Adults living with Sickle Cell are likely somewhat broken or damaged by their experiences. And I don’t mean that we’re all crazy or depressed, I just mean that we’ve all been conditioned to suffer since we were babies and each sufferer is affected by this in different ways. Some sufferers may not even be aware of the impact that suffering has had on their mind and daily living. So even if a patient’s cells are cured, it won’t cure the lifelong trauma in the mind.
And whether it’s bone marrow transplants, stem cells or the crispr gene editing cure, another important fact remains. There isn’t enough data to know how these procedures may affect you in the longterm. The last thing we sufferers want, is to lose one condition that we’ve spent our lives learning to cope with, only to gain another side-effect condition. Let’s not forget, Sickle Cell itself came as a side-effect for the body’s natural evolutionary cure for malaria.
In my honest opinion, although my pains are more common, I would much prefer better prescribed treatments and more mental health treatments at this point in my life. But I cannot speak for all sickle cell sufferers. There are those out there who are in and out of the hospital within a few days or weeks. I do my best to handle my pain at home as the hospitals scare me, and this is another reason I’m not in a rush to try a cure.
” I don’t want to put my life on the line just for the possibility of something going wrong or not surviving it.” – Lioness, another Sickle Cell Warrior
To be clear, I’m not against a Sickle Cell cure existing, because there are people who’d really benefit from it. On top of that, they are necessary breakthroughs in healthcare. The aim of this article was just to put forward the fact that people with Sickle Cell have varied opinions on these cures and for many, the risk isn’t worth the reward.
All in all, it’s great that these cures are there for people who need them, and each sufferer will be able to make a choice whether they want to go through with it or not. But if you’re about to share a post with your friend who is a Sickle Cell sufferer, be sure to ask them how they actually feel about the cure.
Please feel free to open up dialogue about this topic in the comment section below.
