If there is a cure for sickle cell, does it change your genotype to AA or AS? Does it mean you won’t have to deal with sickle cell complications?
There are so many questions that arise when we talk about a cure for sickle cell disease. I decided to learn everything I could about the cure for sickle cell. I’m writing this post to help you answer the question is there a cure for sickle cell disease?
If you are active online you must have seen comments or messages saying they can cure sickle cell.
I have deleted numerous comments and dms on my Instagram telling me how they cure people living with sickle cell.
Anyways, you should follow me on Instagram. Click here to follow me, if you haven’t.
That’s not the point, the main issue here is,
Is there a cure for sickle cell disease?
After all the research I did online, I don’t think I still have an answer.
Let’s start with this question.
What is sickle cell disease?
Sickle cell disease is an inherited group of disorder that turns the red blood cell into a sickle shape. This shape is what causes all the complications that comes with the disease.
Sickle cell is all about the red blood cell. If there is going to be a cure, it has to work on the red blood cell.
The bone marrow transplant involves the red blood cell so it is the only possible cure for sickle cell disease.
I would share my thoughts at the end of this post and leave you to decide if the bone marrow transplant is a cure or not.
Before you continue reading, here is a short disclaimer.
This post is written based on personal research as a sickle cell warrior. I am not a hematologist or medical personnel. It is important to discuss with your hematologist if you have further questions.
Having said that, let’s move on.
What is the bone marrow transplant and is it a cure for sickle cell?
The bone marrow transplant for treatment of sickle cell also called stem cell therapy is a procedure that is used to replace the red blood cells.
Some think the transplant is a surgery. No, the bone marrow transplant is not a surgery.
It is like a blood transfusion where a recipient (the warrior), is injected the stem cell (carrying cells) of a donor.
Here’s how it works
- The first step is by carrying out a test to determine a perfect donor. This donor has to be a perfect match for a very successful transplant. A perfect match is around 85%. It is usually found in siblings or parents.
Recently, it has been discovered that in cases where the sibling or parents are not a perfect match, doctors can consider the half-match transplant where about 50% of the donor matches with the recipient.
- Once there is a match, the stem cell is extracted from the donor usually through the bone marrow.
The bone marrow is located in the ribs, vertebrae, sternum, and bones of the pelvis. In the bone marrow, there is stem cell.
The stem cell is taken from the donor and injected into the bone marrow of the recipient (the person living with sickle cell).
But it’s not that easy.
- Before the injecting takes place, the recipient will have to undergo chemotherapy to weaken or destroy the cells in their body.
This is to prevent the white blood cells from fighting off the visitor in the body (the new stem cell) destroying the organs.
- After chemotherapy, the recipient is admitted to a sterile room to prevent infections because, at this point, the immune system is very weak.
- Also, the recipient will be placed on some drugs and once the doctors think the recipient is ready, the transplant is carried out.
- The new stem cell is injected just like a blood transfusion using an IV tube into the recipient.
- After the procedure, the recipient is still placed under close watch for about 6-12 months before the procedure can be termed successful.
If successful, it means the recipient stem cells will now start producing healthy red blood cells, no more sickle red blood cells.
That means he/she is free from sickle cell crisis and other complications.
However, even though as a recipient, you do not produce sickle red blood cells, you still have the S gene.
That means you can still pass it to your offspring hence, you need to marry someone who is AA. You should not get married to someone with genotype SS or AS.
Earlier, I mentioned that the bone marrow transplant is not available to every sickle cell warrior. In fact, doctors try to prevent it as much as possible.
The question now is,
Who should go for a bone marrow transplant?
- Warriors with frequent painful crisis
Sickle cell affects us differently. Some warriors deal with vaso-occlusive crises more often than others. If you struggle with frequent painful crises, your doctor might suggest a bone marrow transplant.
If you do not have frequent crises like me, it is better to continue managing your health with routine drugs, plenty of water, good food, and other management tips.
- Warriors with acute chest syndrome
Acute chest syndrome is a sickle cell complication characterized by chest pain, cough, fever, hypoxia, and lungs infiltrates.
It is one of the deadliest complications of sickle cell because if not quickly attended to can lead to death.
So, warriors with acute chest syndrome can be considered for bone marrow transplant.
- Warriors with a history of stroke
Stroke is another complication of sickle cell disease. It can happen in kids as well as adults living with the disease.
If you have a history of stroke, the bone marrow transplant can be considered to avoid reoccurring of stroke later in life.
- Warriors with kidney problems due to sickle cell disease
Organ failure, another complication that comes with living with sickle cell disease. Undergoing the bone marrow transplant to cure sickle cell can save the kidney from further damage.
It will also save other organs in the body.
Okay, so now you are aware of the set of people living with sickle cell that really need the bone marrow transplant. The next thing to consider is its success.
How successful is the bone marrow transplant in Nigeria?
Over the past few years, the success rate of the transplant has increased over across the world.
In 2019, the sickle cell foundation of Nigeria in conjunction with Lagos State University Teaching Hospital (LUTH) launched the first bone marrow transplant center in Nigeria.
I don’t know how it is doing recently but as at 2019, the center recorded 80% success in the transplant carried out. Huge success.
The bone marrow transplant has also been recorded as a success across the world. Many of the success recorded was majorly in kids.
Kids with sickle cell disease (between ages 3-15) stand a higher chance of survival and less complication from the transplant.
Yes, rate of complications from the bone marrow transplant increases with age.
It is time for the scary part.
Risks of bone marrow transplant
In few cases the stem cell injected might not be properly matched enough. This causes the body system to reject it and start fighting the body.
This is also called Graft-versus-host disease.
There are drugs that can reduce or help reverse things but if the drugs do not work, graft-versus-host disease can cause organ damage or even death.
Another thing that can work is to destroy the cells again and insert the original stem cell (that is, the one that produces sickle cell) so that the person can revert to how they use to be.
The recipient is at high risk of infection because chemotherapy would destroy the white blood cells that is supposed to fight infections.
It is very important to stay in a sterile room for weeks before being exposed to the outside world to prevent infections.
3. Chemotherapy outcome
Side effects of chemotherapy may include nausea, fever, hair loss, vomiting, loss of appetite, and even skin problems.
Some of these side effects can last until a few days after treatment ends.
The bone marrow transplant can cause infertility especially in adults that undergo it.
This is due to some of the drugs you will be given after chemotherapy as well as after the transplant.
These drugs are not mild on the system. They are really strong drugs that poses harm to organs in the body.
You might want to also know how long it would take to be totally cured from sickle cell disease after the transplant.
Well, usually it takes about 12 weeks to be fully ready to be discharged from the hospital or centre of the transplant but even after that 12 weeks, you still need to keep using your drugs and going for follow up.
So, 12 weeks is ideal.
Like I stated earlier, the transplant will only change your genotype. It does not take away the S gene.
You can still pass it to offspring.
Finally, let’s discuss the cost.
How much does bone morrow transplant cost?
The cost of bone marrow transplant across the world is quite expensive. Some can be as low as N25m which is about $62,000 and some can cost up to $150,000, it depends on the center.
This price usually includes feeding, accommodation but maybe not traveling (in some cases) for about six months or more.
However, the sickle cell foundation Nigeria, is making it as affordable as possible for people living with sickle cell.
It promises to make the cost as low as N5m per patient and I think that is a very fair price.
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Conclusion on is there a cure for sickle cell?
Is bone marrow transplant a cure for sickle cell disease?
I’m still on the fence about this because for some warriors, it is the miracle they have been waiting for. It is unfair to outrightly say it is not a cure.
But the fact that the majority of sickle cell warriors cannot afford it and the risks involved makes me think it’s less worthy of a cure.
The good news is that it is only considered in extreme cases of sickle cell disorder. It is best to learn to manage sickle cell.
I have a complication of quotes for you to help you stay positive and raise above sickle cell. Download it below.
At this point, I will leave it to you to decide.
With the knowledge you have now, do you think that bone marrow transplant is a cure for sickle cell disease?
I’ll love to hear what you decide. Drop your comment below.