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A Future Cure For Sickle Cell?

Recently, an article has gone viral among the sickle cell community regarding a new pioneering treatment which has reversed a teenagers sickle cell disease by changing his DNA. I cannot even count how many posts I have been tagged in and messages I have been sent of this article. If you haven’t seen it, I don’t know where you have been!

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Now I am always skeptical of new “cures” and “treatments” when it comes to any health condition in general; because I believe in cause and effect. In my experience, EVERYTHING has a side effect; and sometimes those side effects can be worse than the initial problem you were trying to fix in the first place. For this very reason, I have never been one to go crazy sharing news stories of hope or to voice my views based on 1 or 2 media articles, since I personally do not take everything that is written by the media as fact. So when I was asked by the BBC to do a live radio interview pertaining to this new development in sickle cell, with one of the lead clinicians on the study who was quoted in the article; I was very eager to hear what he had to say first hand.

I knew everyone would have their own opinion on this, and being only 1 of 15000 people living with sickle cell in England; I wanted to be able to give fellow sickle cell warriors and their family / supporters the opportunity to base their opinion on direct information instead of it possibly being distorted by any bias I may have had. With that in mind, I decided it would be a good idea to record the interview so it could be shared for those who were unable to listen live at the time it aired.

The audio is around 16 minutes long, so here are some of the key points mentioned incase you do not have that time on your hands in this moment:

  • This is not yet proven as a cure; a lot more time, research and clinical trials are needed before this can be certain.
  • There was no mention of infecting the bone marrow with a virus; it is genetically modified using baby (foetal) haemoglobin.
  • Since the procedure almost 2 years ago, the teenager in question has had no symptoms of sickle cell and the disease process has stopped; so it does look promising.
  • It is an attempt to cure those with full blown sickle cell disease and not an attempt to prevent carriers from passing it on.
  • There are currently 7 patients in the US who are being treated with the therapy for sickle cell, however it is too early to comment on the results.
  • The same therapy is being used for Beta Thalassaemia and is more advanced with over 20 patients throughout the US, Europe, Australia and Thailand currently in clinical trials.
  • At this stage, patients would only be warranted this new gene therapy if there is no compatible donor for a bone marrow transplant.

Aside from feeling self-satisfied at the fact that the lead clinician in the study, professor Philippe Leboulch, complemented me on the way I described sickle cell and the nature of the disorder, I must say I was very impressed with his explanation of the therapy and respected his emphasis on the fact that he did not want to use the word ‘cure’. While the title of this post seems very optimistic (I am, and hope to remain a ‘glass half full’ type of person); I am not here to give false hope. At the same time however, we have to acknowledge the progress that has been made so far, and the fact that a company is actually sponsoring the development of a new gene therapy for sickle cell. I think it is fair to say that we are all hoping for a cure for sickle cell, and this seems like it could be a step in the right direction. The issue now is with them being able to carry out enough trials and research on individuals who are willing to try this new therapy. While there could be some very serious risks involved; of which we do not know the details of, I guess that brave decision would lie with the individual themselves.

 

 

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Taking Control

Hi readers, my name is Jenica Leah. Some of you may or may not know that I was born with Sickle Cell Anaemia. I never saw myself being able to share something so intimate out of fear of other people’s opinions. I have come to realise that my opinion of myself is what matters more, so I am ready to face my fears. I hope that in doing so I may be able to help someone else who may be going through something similar.

On the 24th February 2015, my doctor told me that I would need to start having blood transfusions every 4 weeks in order to keep my Sickle Cell under control. I was told that if I didn’t start having blood transfusions, my health would deteriorate and I would be in need of a blood exchange within 3 months. Since I had already been through years of monthly blood transfusions as a result of having a stroke when I was 13, the thought of having to go through it all again in my adult life brought tears to my eyes. I was not about to go through all that again. So, I simply said “No”. This time I was going to be in control and make the decision I felt was best for me. Obviously my doctor didn’t accept my answer that easily and we ended up negotiating over my health. In the end, we agreed that we would wait and see what happened in 3 months time, if my doctor was right and I started to deteriorate then I would do what was advised.

Well 3 months turned into 6 months, and 6 months turned into 9. Today, 1 whole year later, blood transfusion every 4 weeks for who please? Certainly not me! Lol.

Today is like a mini birthday for me and a part of my celebration for reaching this milestone is being able to share my journey with you. So here goes.

When I turned 25 in 2014 I became a different person; an unapologetic version of myself who was not afraid to stand in my own truth. It could have been due to the fact that I had a major operation scheduled shortly after my birthday that year. I’m not sure, but it was as if a penny had dropped or something had clicked and I finally decided enough was enough. Life is too short to not put my own happiness and self love before anything or anyone else… I loved the new me.

I began to get to know and understand myself, so much so, that it became easy to identify which situations in my life were bringing me happiness, and which ones were bringing me the opposite. My health was a particular situation that was obstructing my happiness at that time, so I had to take the time to ask myself why. Eventually, the answer came to me; it was because I was not in control. I was just going along with whatever happened or whatever I was told would happen with my health, and just accepting it.

I thought about this for weeks. (I had a lot of thinking time during recovery from the surgery I had). I would speak out loud to myself… because I do that sometimes;

“Jen, you’re the type of person who likes to do what you want when you want, so why have you been allowing doctors to make decisions that they think will be best for you?”

“How can someone else know what is best for you?”

“Why are YOU not in control of YOUR health?”

Deep down I knew why, but it was difficult for me to accept it; sometimes it’s hard to deal with your own home truths. My home truth was that I was scared. I was scared to take responsibility for myself getting sick if I took control.

It’s easy to blame ‘Sickle Cell’ and ‘the doctors’ for things that go wrong, but what about ‘you’.

Some people may disagree with that statement, but I know it to be true from my own experience and what I have seen of others. If someone with Sickle Cell has a really bad crisis, is it just because they have Sickle Cell? If the doctor gives you medication to treat one problem but the side effect causes another, is it just the doctors fault? What have you done for you lately? That’s a question I had to ask myself. Am I eating the right food? Am I drinking enough? Am I resting enough? These were all things that I could control, but I chose not to at the time. I had to make a change. I had to stop being scared. From that point on I decided that if I’m going to be in pain, get admitted to hospital and whatever else may come, it will be because of my own actions, not anyone else’s.

That decision changed my life. For the first time ever I began to think more about my actions and what would happen as a result of them. I realised that if something was wrong, there would always be a valid reason; cause and effect. I delved into different foods and what value they brought to my body and actually changed my whole diet completely. I evaluated my personal life as I realised that my mood affected my health; negative people and negative situations drained energy that my body needed, so they had to go. I joined a gym and introduced regular exercise into my weekly routine. Most important of all, I laid off the drugs. Yes, you read that correctly. There had been times where I would take regular doses of opiates every day to cope with my chronic pain and to manage any sickle crisis I had. Taking morphine was as normal as having breakfast. The thought of what damage these drugs were causing internally gave me enough motivation to do something about it. Doctor’s may prescribe strong medication but they don’t tell you how to stop taking it. I had to start from square one and get in tune with my body all over again. I had to learn to tell the difference between real pain and mimicked pain that was a side effect of coming off opiates.

Let me tell you now, it was not easy making changes to my life. Thinking about how those closest to me must feel when they have to visit me in hospital and see me crying helplessly in pain made me feel guilty. Guilty because I now realised that I had actually been doing nothing to help myself. That guilt however, was also my motivation. I didn’t want the ones that I love to have to go through that again. That motivation kept me mentally strong throughout my journey.

Today, I am so proud of myself for accepting my truth and facing my fear of taking control of my health. I believe that everyone reaches a point where enough is enough and in that moment you can choose to make a change. I chose to make that change and have never looked back since.

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