Sickle Cell and the NFL

I often think to myself, ‘why aren’t people doing more?’

There are so many individuals who have platforms they could use to raise awareness, surely some of them must be using it for a cause that needs it, such as sickle cell.

Sickle cell affects millions of people throughout the world; approximately 15,000 in the UK and 100,000 in America. With those huge numbers, I find it hard to believe that only a handful of celebrities and people with large followings talk about and support such a common genetic disorder. So, I started digging… it’s amazing what you can find when you just look!

My search lead me to the National Football League (NFL) which, for those of you that don’t know is a professional American football league. It is considered one of the most popular professional sports organisations in the world, and some of the players from its 32 teams have been supporting sickle cell and raising awareness through a campaign called ‘My Cause My Cleats’.

The NFL has a 17-week season and during week 13 games, players are allowed to feature a unique twist on their usually strict uniform policy and wear custom designed cleats (shoes) that support different charitable causes of their choice. Each pair of cleats are then auctioned off with 100 percent of the proceeds going to the charity of that players choice. The ‘My Cause My Cleats’ campaign was introduced in 2016 as a result of players being fined over the years for using their uniforms as a way to highlight and support causes that they believe in. The success of the campaign last year convinced the NFL to bring it back for 2017, and last week around 800 players from the league participated.

I was overjoyed to see that sickle cell was there amongst the hundreds of other wonderful causes, so I thought it only right that I shine light and share with you all a few of the amazing players that were promoting sickle cell awareness.

 

Chris Banjo – New Orleans Saints

“For this weeks #MyCauseMyCleats I am proud to bring awareness to Sickle Cell Anaemia. Not only has this disease taken the life of my mother but has also affected the lives of many. To all my Sickle Cell Warriors…I encourage you to stay strong and to continue fighting…”

Jerry Attaochu – Los Angeles Chargers

“My cleats support my own charity @gloryshopefoundation which helps tackle sickle cell disease; something my sister and countless others suffer from.”

Jason McCourty – Cleveland Browns & Devin McCourty – New England Patriots

“We will be representing our Tackle Sickle Cell Campaign with @embracekidsfoundation

Jordan Mills – Buffalo Bills

Mills’ chosen charity is the Sickle Cell Disease Association of America, in honour of his Nephew who has sickle cell.

Also supporting the sickle cell cause was linebacker Nic Harris who has the sickle cell trait, and former player Rodney Harrison who supports the Sickle Cell Disease Program at the Children’s Healthcare of Atlanta.

So, people are using their voices and platforms to raise awareness for conditions such as sickle cell and it’s beautiful to see.

The next time I watch the Super Bowl, I’ll be feeling quite proud.

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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.