Letter to My Young Sickle Cell Warrior

Dear younger self,

If I could send a letter back in time to tell you how far we’ve come I definitely would. Our childhood was plagued with lots of hospital visits and sleepless nights, but younger me, believe me when I say, it gets better.

I know it seems like you’re always ill and you don’t really understand why. The pain you feel in your arms and legs isn’t like the pain when you bang your arm or fall over, it’s stronger and lasts so much longer than a few minutes. Other kids don’t really understand what’s going on but they can see it on your face, you’re not your usual cheeky self. Mum has to come and get you from school again and you don’t really know how long it will be till you are back, it makes you sad because you actually love being at school. You love to read, learn new things and be with those your age. You can’t say the same when you are at the hospital. It’s cold, it’s lonely and you’re with strangers on the hospital ward. You wake up randomly in pain to roll over and see mum in an uncomfortable chair by your side. You can’t help but feel its your fault, she already works a lot and you don’t want to be more of a burden. You silently cry, not just because of the pain, but because you are tired of making things hard on mum, things are already difficult for her. Sometimes you wonder why you’re the one with all the problems, why you can’t be ‘normal’, if it gets any easier. You feel sad, isolated and angry at the world, no child should feel the way you do.

To my younger self, it does get easier, things get better and the hospital isn’t a second home. You begin to understand that you need to rest more, eat well and do what’s best for your body. It was hard to figure it out because we wanted to play and have fun like everyone else, saying no wasn’t in our nature. Eventually you realise its okay to say no if it’s not right for you. You go on to make great friends, some you’ve known for years, you have a wonderful relationship. A bae that understands you’re not always well and is there for you always (We worried about that didn’t we). You challenge yourself every year to complete tasks that you never really thought you could do. Last year we climbed the Atlas mountains, okay we kinda got a minor crisis but you managed it like you’ve learnt to do. Those hospital admissions are in the past, we haven’t been for 5 years. Mum doesn’t have sleepless nights worrying about you. Granny is in heaven now but we did her proud and continue to do so. You learnt, should I say we learnt, that we are strong enough to carry this burden and do whatever we put our mind to. We built a strong foundation, from the pain, tears, hopelessness and tribulations to build something that has transcended the shackles that held us back. We have our smile now, always. At the point of writing this letter, I know things will continue to be even better.

With love, your older self.

Be sure to share, re-tweet and engage in the conversation, let’s all do our part to raise awareness for Sickle cell!Post by @DD_Dunstan for @sicklekan

2018 the preview

First of all, Happy New Year! Everyone at SickleKan would like to thank you for all the support we have received, in the various ways you have given it. Getting actively involved in spreading awareness about Sickle cell, having conversations about the topic, donating blood and even the likes and re-tweets we get,  we truly appreciate it. 2017 was very hectic, filled with so many events and campaigns to get our message across. We collaborated with the NHS on a very successful blood drive in December. Appeared on multiple TV, radio and media outlets (including Buzzfeed!) to spread awareness about Sickle Cell anaemia to a wide audience. Our team has also been active within hospitals to help train staff doctors and nurses about the disease from a patient perspective. In addition to this we have mentored children in schools, hospitals and have collaborated with the local government on policies in relating to sickle cell disease.  If you would like to get more involved with the cause then please do get in contact!

Last year we inspired people to become heroes of their own right and give blood, we will continue to do so this year. In February most of us will take  the journey to Wakanda (figuratively) for the highly anticipated Black panther movie.  Our aim at Sicklekan is to also take you to the place where heroes of reality are born, with our latest blood drive! Please stay connected with us to find out more about this event, become a hero for the BAME community, save lives this February. Also look out for other events we will be having throughout the year and check out our website : http://www.sicklekan.com to stay up to date.

Again thank you all for your support, wishing you a prosperous, healthy and wonderful new year!

Be sure to share, re-tweet and engage in the conversation, let’s all do our part to raise awareness for Sickle cell!

Limitations

One thing I’ve been struggling a lot with recently is my limitations as a Sickle Cell warrior. I try my best to stay healthy, be positive and have fun. However, as the cold sets in it becomes easier to forget to stay hydrated and a crisis is a lot more likely this is when I find myself limited. Limited in what I can and can’t do. It’s hard. It’s really difficult to live life with a cap on it. When I was younger I limited myself mentally and this ruled my life for quite some time. I would think ‘I can’t do this because somehow I will be in pain and I don’t want to be. If I go out and I’m not wrapped up properly I could suffer excruciating pain later that day, is it worth it?’

A crisis I had a while ago after a friends’ University leaving party really sticks out in my mind. Earlier that day I had my university registry event from 10- 4pm so I didn’t get back home till about 6 (I lived 2 hours away from uni). Once I was home, all it took was a quick change and I was off to this party. Now it was a cold evening and became even colder as time went by and the party started to spill out to the outside as the house was too small. Somehow, I ended up out in the cold, living my best life with my friends even though I was not dressed correctly for this weather. For those with Sickle Cell you know what comes next, I haven’t rested, haven’t stayed hydrated and I’m out in the cold.

Few hours later, after getting home I was in an ambulance heading straight to the hospital. One of the nurses asked me what happened and I explained, she then said was it worth it? I never replied but in my head I screamed YES and I would do it again! Even with the excruciating pain I was experiencing as a result, I would do it again, it most definitely was worth it. To just enjoy the moment, to just be among friends, to be like everyone else, to not be limited. Although saying this, with age does come experience, lessons learnt and I would definitely do it again but be smarter. I would wear layers, be well rested, well hydrated and not stay too long out in the cold, but still live my best life.  I’ve learnt never to put a cap on what I can and can’t do. I just have to do it differently.

“You have to believe that something different can happen. He who says he can, and he who says he can’t, are both usually right”- Will Smith & Confucius 

People had doubts whether I could live out and survive university, “He won’t do well because he has Sickle Cell and won’t be able to manage”. It affected me because sometimes you can’t help but take on some of the negativity. People without Sickle cell often found university hard and couldn’t cope, how could I? To those people who doubted me, and in truth to myself during those times I doubted me, I survived university. In fact, I did better than survive, I conquered! I never once went to hospital during those 3 YEARS. I had my crisis, oh trust me I did, but I managed. I graduated with a first-class degree in Biosciences as a young 20 something year old black man from south east London with sickle cell anaemia.

It’s not something I’m using to boast, it’s something that I hope will inspire, that will push people to break those limits that we put on ourselves both consciously and subconsciously. In truth life is hard, whether you have a chronic illness or not, but it is within all of us to want to do more, to break our limitations.

“Because limits, like fears, are often… just an illusion”- Michael Jordan

 

Be sure to share, re-tweet and engage in the conversation, let’s all do our part to raise awareness for Sickle cell!Post by @DD_Dunstan for @sicklekan

Give Blood NHS

Hopefully by now you would have seen the amazing thread by GiveBlood NHS on twitter. It really caused a stir on social media and even trended for a while with many people responding to the humour and the facts from the series of tweets. It just goes to show that information presented in a different way can really change the way people take on new information. We’ve always known about the importance of giving blood here at SickleKan as most patients with sickle cell anaemia receive a blood transfusion to replace the unhealthy cells in their body.  Sometimes we forget that it isn’t common knowledge.

I remember listening to a DMD podcast a little while back and they debated whether a heart transplant would help cure sickle cell because it pumps blood around the body. Eventually they figured out that blood is made by the bone marrow in your body, and the only known cure for severe sickle cell is a bone marrow transplant, as this procedure leads to the creation of  sickle free blood. As this procedure needs a donor match and also has many risks and side effects, it isn’t available to all. This means the only real treatment that provides some relief is a blood transfusion. Although not a permanent solution, the main benefit is that you are more likely to find a blood donor match than a bone marrow donor match. This procedure is faster and doesn’t need any general anaesthetic, meaning the patient can leave the same day and get on with their lives.

“Carry out a random act of kindness, with no expectation of reward, safe in the knowledge that one day someone might do the same for you.” -Princess Diana

Unfortunately there are so many different blood groups that resources are limited, in particular in the black community as the twitter thread by GiveBlood NHS pointed out.  Black people are more likely to have a rare subgroup called Ro, ten times more likely than a white person. There is a real need for Black communities to step forward and give blood because at the moment we are failing each other. We need blood donations from everyone white, black, Asian and other ethnic minorities but this fact highlights the need for more black donors.

In a previous post (Hidden Figures) I queried if people really care enough about a cause if it doesn’t directly affect them? If you don’t know anyone that needs blood why would you give blood? No, we need to change this way of thinking. The act of giving blood is an act of heroism, and an act of saving a life. You may think i’m over selling it, how can giving a bit of blood really have that much of an impact? It’s not an organ or anything, WRONG! It goes a really long way. It can save the life of someone in a car crash, it can save the life of someone that’s been shot and desperately needs blood.

For people with Sickle Cell anaemia its another chance to go out and continue trying to live a normal life, another chance at breathing, living, being. We as humans can’t continue to live for just ourselves, a little bit of heroism goes a long way. To save a mother, a father, a brother, a sister or a friend. Your blood, that essential ingredient for life could give another person a second chance at life. Don’t we all deserve a chance? Wouldn’t you feel amazing to know that your blood, that precious ingredient, has saved a life?

No one can survive in this world without an act of kindness given to them, giving blood is a single act of kindness which we can all do. Kindness, something our world, our nation, our societies, our communities could all do with a little bit more of.

Be sure to share, re-tweet and engage in the conversation, let’s all do our part to raise awareness for Sickle cell!

Post by @DD_Dunstan for @sicklekan inspired by @GiveBloodNHS

Please visit: https://www.blood.co.uk and http://www.SickleKan.com for more info.

Hidden Figures

There was a Black History Month event at King’s College London which screened the movie Hidden figures, followed by a panel discussion. Now I’ve never seen Hidden Figures or even read into it, I wasn’t really sure what to expect. Long story short for those who haven’t seen it, it’s a biographical drama about the very real struggle of three female black geniuses in a time where segregation, racism and prejudice was very prevalent. These three women through similar struggles, strive for something better, something more than what they had been boxed into, simply because of the colour of their skin. There are many themes and scenes I would love to discuss in depth but I would like to highlight 2 key themes which really resonated with me.

Scene 1- The white saviour.

Without spoiling it too much there is a scene in the movie where the boss (white man) comes and makes a change that allows the main protagonist Katherine, (black female) to do her work better.

Now during the movie I said to myself, did this really happen? Was a white man in those times actually brave enough to go against everything they had been taught to make the change? Did somebody actually say no, let’s do better? It triggered me because the boss only did that because it benefited him. If she wasn’t doing work for him the change wouldn’t have happened. If he didn’t perceive it to directly affect him, things would have continued as they were until somebody took a stand. Lo and behold, to my fake surprise, this scene never happened in reality, but for dramatic effect Hollywood put it in there to create a “hero”. A white hero. When the film had 3 wonderfully talented black female heroes. We. Did. Not. Need. A. White. Hero. The reality is that Katherine did what she wanted to do anyway because she was just that awesome.

Do people care enough when it doesn’t affect them? If it doesn’t directly affect you, do you really care? Sickle cell anaemia is one of the most prevalent genetic diseases of our time, but does your neighbour care about it? Does your work colleague or classmate even know about it?  How far does a disease have to go before everyone is on board to prevent it? Anyone and everyone can get cancer so we all take the precautions to beat it, donate to causes to fund the research for it, talk about it, but why can’t we do the same for Sickle Cell anaemia? In the movie they made a person in the position of “power” make the change that everybody fell in line with. A fictional addition. Does our society have to have a person in power to make sickle cell known? Talked about? I don’t believe that, the harsh reality is that there isn’t just one person in a position of “power” that can take on that burden and raise awareness for Sickle cell. We have to take this into our own hands, within our own communities and make the change on how people view Sickle cell.

“You may not control all the events that happen to you, but you can decide not to be reduced by them”– Maya Angelou

Scene 2- Hidden Figures

The theme for the whole movie is that there are amazing stories to be told and amazing people all around us. The issue is that the light isn’t always shone on everyone equally. We live in a time where it’s so difficult to shine or even be heard because, if it’s not race, its religion, if it’s not religion, its appearance, gender or sexuality. This has to change. It was powerful to see that in the face of adversity these women still achieved and did what they could because they believed it was possible.

In this generation the challenges are more subtle, the stereotypes, the pessimism are all there but just quietly ticking away at all of us. I can only imagine the amount of young black people that deal with these issues everyday but are told racism doesn’t exist anymore. To be told you’re not good enough, to be seen as someone inferior. Now add on top the stresses that come with Sickle cell anaemia, but those amazing people still continue to push through their pain, their hardships and are successful at what they do.  Hidden figures is a movie about women who were never truly recognised at the time until now. I want to take this opportunity to say that those hidden Sickle cell warriors are recognised by us at Sicklekan and should continue to move forward and let your excellence shine for everyone to see. To one day see the narrative change for Sickle cell anaemia and one day get the awareness and recognition it deserves to combat it.

Be sure to share, re-tweet and engage in the conversation, let’s all do our part to raise awareness for Sickle cell!

Post by @DD_Dunstan @sicklekan

Sickle Facts

1# One development that is part of Black history that should not ever be forgotten is The Black Panthers Party’s role in Sickle cell awareness. We touched on this in a previous post:   The made great strides in getting sickle cell awareness back in the 60’s and 70’s. “The Party’s Sickle Cell Anemia Research Foundation, was one of the nation’s first Sickle cell testing programs. This inspired the federal government’s initial funding of sickle cell research. At the time 98% of victims with Sickle-Cell disease were Black. The aim of the party was to provide knowledge to black people so they would be able to care for themselves. The power of knowledge was vital back then because it made such a difference to the lives of black people at the time. They believed that the greatest power was KNOWLEDGE.

2# Currently 1 in 10 babies born in Jamaica carry the Sickle cell trait gene. Some are not even diagnosed until adult hood. Due to this lack of awareness and knowledge about Sickle cell, they are unprepared for the fact that the full blown condition “Sickle Cell Disease” can be passed on to their children (1 in 4 chance) if they have a partner that also carries the trait gene.

3# Sickle cell disease affects approximately 100,000 Americans.
Sickle cell disease occurs amount 1 out of every 365 black or African births.
Sickle cell disease occurs in 1 out of 16,300 Hispanic American births.
About 1 in 13 black African American babies is born with sickle cell trait.
These facts stress the importance of getting tested for sickle cell trait to understand the possibilities that you could pass on, not only the trait gene but the full blown condition to your children.

Its vital if you are not sure about whats in you blood to be tested. Get tested today. Know your sickle cell status!

Be sure to share, re-tweet and engage in the conversation, let’s all do our part to raise awareness for Sickle cell!

Post by @DD_Dunstan @sicklekan

Warriors Showcase: Dunstan!

Meet Dunstan. Advocate, Sickle Cell Warrior, Scientist, Blogger and Foodie.

For me Sickle cell anaemia is like a beast kept in a cage within me (like Naruto if you’re into anime!). When it is locked up and sealed away I’m just like everyone else. No pain, no fears, living life. But should the shackles come loose, the cage broken then the beast is set free to take over. I begin to feel the changes take place, the sickle cells circulating all over the body until they reside over one or multiple areas. Maybe in my knee or my back or my arms, it could be anywhere. Then the fight begins, the fight for my health, to return the beast back to its cage. There’s an interchange between consciousness and unconsciousness. My breathing is accelerated, body sensitive to temperature and pain pulsating throughout my body.

“Pain is temporary. It may last a minute, or an hour, or a day, or even a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever” – Lance Armstrong  

So how do I manage such pain? Well first and foremost prevention is better than cure, I do everything I can to ensure I don’t have a crisis. Drink plenty of fluids, maintain a balanced diet and try to do moderate exercise. Unfortunately there’s a bit of an inevitability that I will get a crisis whether its days, weeks or months before the next one, one will come. Just before a crisis starts I like to get myself ready by getting the medication I need, a hot water bottle and loads of bottles of water in order to make sure I am as comfortable as possible. Sometimes there is no warning but now I sort of feel it coming say about 3 mins before the pain kicks in. I try my absolute best to manage my crises at home and usually I’m bed bound for a while so preparation helps if I’m by myself.  Mostly for me I get a crisis at night so I don’t sleep at all. So to distract myself I start binge watching a lot of shows because with the pain I’m in it feels almost impossible to sleep. Once morning hits I decide whether it’s painful enough for me to go to hospital or stay at home. After all these years I know the difference between a crisis that I can manage and a crisis I need to go to hospital for. That kind of judgement comes with experience and age but the most important is doing what is going to get you feeling better sooner.

Be sure to share, re-tweet and engage in the conversation, let’s all do our part to raise awareness for Sickle cell!

Post by @DD_Dunstan @sicklekan_

Ancient Egyptian Sickle Cell Disease

So for one of the most common genetic diseases, Sickle cell is far from the most researched. However, incredibly scientists found that the cause of death of the famous Egyptian King Tutankhamen, was actually Sickle cell disease and not malaria as suspected previously. That would date one of the first records of Sickle to be in 1300 BC!! Death at a young age was common back then, but how many more deaths were accelerated because of Sickle Cell? With the living conditions we can only imagine how the intense heat and environment could have affected him and many others sickle cell.

Warriors Showcase: Yvette!

Meet Yvette Fay Francis-McBarnette, a Jamaican-born medical pioneer in treating children with sickle cell anaemia, died on March 28 in Alexandria, Va. She was 89.

Continuing our Black history month theme, we at SickleKan will also be giving light to those tied to Sickle cell history and their great achievements. Yvette is one of those people who were doing what they could for this disease before it was even talked about on the scale it is today.

After completing her medical studies and then going on to specialize in Haematology, (study of blood) Dr Francis later became director of the Sickle cell anaemia clinic at Jamaica Hospital Medical Centre in Queens. She was one of three founding members alongside Dr Doris Wethers and Dr Lila Fenwick who started the Foundation for Research and Education in Sickle Cell Disease.

“In history we find the lessons that teach us what it means to find hope for the future” Anon. 

Yvette was one of the first pioneers to test antibiotic treatment with her patients. The results of this treatment were found to be positive however, as with many new forms of treatment the effectiveness was not confirmed until fifteen years later in a published article by The New England Journal of Medicine in the 1970s. This discovery went on to be one of the influences which has led to the use of Penicillin and other antibiotics as a common prescription for sickle cell anaemia patients today.

During the administration of President Richard M. Nixon, Dr. Yvettte Fay Francis-McBarnette was named to a White House advisory committee, whose recommendations led to the 1972 National Sickle Cell Anaemia Control Act, which appropriated federal funds for screening, counselling, health education and research!

We are forever grateful for your work which has enabled people with Sickle cell to live better lives today. Rest in peace.

Isn’t it incredible that these changes were implemented in the 60/70s and paved the way for how treatment works today? Do you think we’ve moved further than this? That from then to present day, there have been significant strides forward? We at SickleKan think yes there is progress but there is still so much further to go. We need more lights like Yvette to shine and carry on her legacy, until we have truly overcome and defeated Sickle Cell anaemia for future generations. In history we find the lessons that teach us what it means to find hope for the future, SickleKan are very hopeful.

Be sure to share, re-tweet and engage in the conversation, let’s all do our part to raise awareness for Sickle cell.

Post by @DD_Dunstan @SickleKan_

#WorldMentalHealthDay

We couldn’t let World Mental Health day pass without giving our own little piece. SickleKan believe that mental health is very important and needs more than a day to shine light on this topic. However, we have to start somewhere and are overjoyed that we have this platform to tackle this stigma head on. Part of our mission is to give people with Sickle Cell anaemia a voice, we are more than just patients, more than just people who need medicine. It needs to be acknowledged that Sickle Cell anaemia is not just a fight with your blood cells, it’s a spiritual and mental fight to continue to stay afloat. As someone with Sickle cell it’s easy to succumb to negative thinking, depression and anxiety. Think about it, we live our lives one day at a time doing our best to stay healthy, hoping and praying that another crises will not come along. It’s hard to live to the fullest when a little exertion here, a little infection there, could lead to your body shutting down and other complications. You have to find something within you that keeps you positive, something that keeps you going and anchors you to positive thoughts.

In life there are many struggles, yes with Sickle cell and other chronic diseases the burden can be heavier than most but mentally we have to be strong. Sickle cell has hindered myself and others in many ways however, it has also been my driving force to push us forward. Nobody wants to be known as the person who has Sickle cell anaemia and can’t do anything. Instead we push ourselves to be greater than that, to achieve and succeed through the trials and tribulations of life.

“Everyone you meet is fighting a battle you know nothing about. Be kind. Always.”  Brad Meltzer

The theme for this #WorldMentalHealthDay is mental health in the work place.  The best way to delve into this deeper would be from my own experiences. I’ve been working full time for two years now and so far I’ve been healthy. I’ve had a few minor crises, but I’m literally doing the most to stay well. While at university and college I always had a part time job to fund things I wanted to do, like my driving and car expenses. I can recall on a few shifts where I’ve had a crisis and still managed to do the work. I’m too stubborn for my own good, I look back and I’m like how did I do that? How did I lift boxes when the pain in my arm was so bad it would tremble? If I ever had to take time off I would lie and say I have the flu or stomach pains, I couldn’t ever bring myself to say I have a Sickle cell crisis. I feel like this is the same for mental health, would an employer grant me time off if I said I was feeling depressed over my Sickle cell? Will they understand? Will they treat me differently? It has always felt laborious to explain what it means to have Sickle Cell, I wanted to avoid the: “Oh what’s that? Do you always have it?” Saying I had the flu was easier, less complicated, I mean everyone knows and can relate to what that is. Talking about anxiety, suicidal thoughts and Sickle cell anaemia? Not so much unfortunately. Fast forward to now and I’ve finally put on my medical form that I have Sickle cell! Trying to describe it to the occupational therapist was really tedious. The questions were so annoying; how often are your pain episodes? How long do they last? What do you do when you’re in pain? For most of these questions all I could answer with is it depends or it varies. It’s so unpredictable that there is no solid way of predicting when, how long, or how severe it will be. I don’t think the therapist fully understood what I was trying to get across but it’s not down to ignorance, more a lack of understanding and available knowledge. I admire those who have had mental health issues that are strong enough to take the appropriate steps and speak up about their mental health. This is so important, we have to make our voices heard, for mental health, sickle cell anaemia and other health issues which are brushed under the carpet.

If you have Sickle cell anaemia what issues have you had to deal with at work? What mental health issues have you faced? How did you overcome it? What can we do to raise awareness for both Sickle Cell and mental health?

Post by @DD_Dunstan @SickleKan_

Be sure to share, re-tweet and engage in the conversation, let’s all do our part to raise awareness for Sickle cell!