I Attended the Sickle Cell Society AGM

On Saturday the 18th July I attended the annual Sickle Cell Society AGM. I was invited to attend by a family friend who also suffers from Sickle Cell disease. I’d never been to one of these events before so I wasn’t sure what to expect, but I came out of it feeling very positive. I discovered that there are many more sufferers out there going through the exact issues that I deal with. During the Q&A session it became clear just how much support for Sickle Cell is needed across the country. People traveled from all over to attend this event and let their concerns be known to the folks that run the society.

Below is a summary of the events.

Kye Gbangbola discusses the picker survey & more

Kye Gbangbola who recently suffered the loss of his son after a tragic hydrogen cyanide gas incident (more below), opened up the event. As I was traveling from Luton I missed the opening of the event. But there’s a PDF showing some of Kye’s talking points.

One of these involved the Sickle Cell survey. It’s important for the society to understand the type of healthcare sufferers receive, so that they can work with different institutions to ensure we get the correct treatment. The Society can only address what has been brought to their attention, and the survey is just one way to achieve this on a large scale.

drstavros

Dr. Stavros Loukogeorgakis talks treating Sickle Cell in a child before birth

Dr. Stavros came on stage to discuss his research that would allow his team to treat and even cure Sickle Cell in a child before they’re born. This process would involve replacing the baby’s defective stem cells with genetically corrected stem cells from amniotic fluid.

Dr. Stavros is working to test this process on humans and then make it widely available across the United States and the United Kingdom. Currently the research has been carried out successfully on mice and monkeys. After further research and testing to ensure the process will succeed on humans, they plan to open this process up for live testing. After being asked about the success rate of this process, Dr. Stavros made clear that the chances of a miscarriage occurring would be one in a thousand.

Should this research come to fruition:

  • Every  fetus  diagnosed  as  affected  by  sickle  cell  anaemia  can  be
    safely treated before birth.
  • The technique would be disseminated to other centres and ultimately
    other countries.
  • There would be incredible  cost  savings  when  compared  to  standard  treatment  of
    sickle cell anaemia and its complications.
  • If  it  works  for  sickle  cell  anaemia,  it  can  be  applied  to  other
    diseases.

This is a pretty big deal, as people are often cautious of conceiving a Sickle Cell child. I plan to keep up with this research, and I’ll post any new information I find.

AGM Awards

During the afternoon the society gave out awards based on personal achievements. Imagine how shocked I was to learn that I won an award? When they called my name I was caught completely off guard. I was aware that I’d been nominated but I didn’t expect to win anything as I was sure there were many out there that had accomplished more than I. I was awarded for my creative efforts as a Sickle Cell sufferer (my articles and my novels). I probably made a fool of myself on stage as I was so nervous, and I can’t even remember what I said, it was all a blur.

I’m sure many others could have won awards in my place if they’d been nominated, but I’m thankful to the lady who nominated me, and I appreciate Baroness Floella Benjamin, OBE for taking the time to look through this website and select me as a winner.

I would also like to acknowledge the two other award winners; Rahima who won the Black on Black Award for her story, and Jacqui who won volunteer of the year for her tireless work.

Common Sickle Cell Issues

There were many issues raised during the Q&A session that I’ve made reference to in my Sickle Cell diaries, and many that I haven’t yet got around to discussing. Although it’s sad to know that people go through these things, it’s great for all of us to know that we are united in fighting these issues.

Here are some issues that people raised during the Q&A session that really resonated with me.

Nurses and carers on the wards treating writing us off as morphine addicts

During my crisis earlier this year, one of the male nurses tried to make a joke with his colleagues about me being hooked on morphine, because I requested pain relief early in the morning when the pain was so severe that I couldn’t sleep. I was hurt to know that this is a common occurrence throughout the country. It comes from ignorance and the lack of understanding of Sickle Cell pain.

GPs lack of understanding

When it comes to awareness of Sickle Cell, a lot of the research is still fairly new. So the majority of GPs (General Practitioners), nurses and carers aren’t as knowledgeable when it comes to Sickle Cell because it likely wasn’t a huge part of their curriculum. This is why it’s so important for the society to understand our issues dealing with the NHS and other healthcare associations.

With all of our numbers combined we can communicate our needs to these groups so they finally hear us out and understand the treatments we need. I know from personal experience that GPs can completely disregard details that should be common knowledge with Sickle Cell patients. It seems that many others are having the same problem.

Priapism

I plan on writing a whole blog on this one day. But basically this is an issue that affects men. It can happen to males without Sickle Cell disease, but males that have the disease are at higher risk of long-term damage. Priapism is where the artery to the penis opens wider and blood rushes into the penis. Veins carrying blood away from the penis are shut down. Blood then becomes trapped inside, making it hard and erect. You can tell you have one because the head of the penis becomes sore, it feels significantly different to a regular erection.

If this is left untreated for an extended amount of time it can damage the tissue inside the penis. This usually occurs during the early morning, as erections are quite common while sleeping.

There are a number of things you can do about Priapism should you experience it. Most find that jogging or exercise gets rid of it right away, and I can vouch for this method myself. There’s also another method which should come quite naturally for any male.

A lady at the AGM mentioned that there wasn’t enough awareness about the risk of Priapism, and I wholeheartedly agree. This is all information that I learned in the past two years, after living with Sickle Cell since I was born. These are things that people need to be made aware of so that no long-term damage is caused.

Unknown medication being forced on us

Another lady raised a complaint about being given medicine as an inpatient that she’d never heard of before (Oxytocin). When she looked it up later she realized it was a hormone in mammals. Why was she given this medication when she was in hospital for a Sickle Cell crisis?

I find that when I’m in hospital with a crisis they’re always giving me new medications that I haven’t received before. Sometimes this can be distressing as we don’t know how these medications will affect us with our condition. They’re not always tested for Sickle Cell sufferers, so who knows if they could make our condition substantially worse? Furthermore, they may be giving us medication that isn’t even necessary for us to receive, simply because they don’t understand our condition.

I personally think there should be a unified list of medications that are approved for people suffering with a Sickle Cell crisis. I’m not trying to say that a Sickle Cell suffer shouldn’t ever receive other medications, but when it comes to a crisis in particular there are already treatments that are proven to work. If the person with Sickle Cell happens to be suffering from something other than a crisis then I can understand introducing new treatments.

The need for psychological counselling

As I’ve discussed before, nobody ever talks about how living with Sickle Cell can affect your mentality and way of thinking. This is a topic I hope to write about a lot more in the future, as I’ve had some extremely grim thoughts about my life in the past. Depression is quite common for people even without the disease, so imagine how it feels to grow up feeling inadequate, and different from everyone else. I was never able to bond with my friends through sports and other physical activities because my condition wouldn’t allow it.

Sickle Cell is something that affects us all differently; some may live fine with it while others are forced to live an alternate lifestyle. All of this weighs on the mind as much as the body. During the Q&A others made known their concerns about the lack of counselling, and I hope this is something we can improve.

Truth about Zane

zane1
I mentioned Kye Gbangbola earlier, who was the father of Zane Gbangbola who died a day after his home in Chertsey was hit by severe floods. Officials tried to cover up the cause of Zane’s death by writing it off as carbon monoxide poisoning. However, family, friends and the fire services crew have highlighted that there is evidence to suggest the real cause was hydrogen cyanide, a toxic gas that can lurk in unregulated landfill, released from the ground by mixing with floodwater.

“The fire and rescue team who attended the incident and monitored the air in the family home confirmed pockets of hydrogen cyanide were present. Hydrogen cyanide was also found in the family’s blood. It is understood that hydrogen cyanide can be released into the breathable atmosphere from flood water following a change in pressure or temperature. If this was the cause of Zane’s death, then clearly there are issues of public safety that require urgent attention.”

It is important that we support their campaign so that people know the truth of what happened, because this is something that could affect us all. It was devastating to hear about the death of Zane, but imagine if this happens again to one of your family or friends? Kye Gbangbola was also affected by the incident and he is now in a wheelchair. Please do your part and sign their campaign, they aren’t asking for money, they’re simply asking for you to sign your name so we can let the world know the truth.

Summary

The SCSAGM event touched me deeply, and I have now registered to the society. I hope to work with them in raising awareness of Sickle Cell disease so that the necessary support is there for the younger generation of sufferers. Feel free to contact me for more details on anything I’ve written about here.