As part of our 'Black Blood Appeal' Campaign and in the run up to our 1st Blood Drive, we asked our 4 ambassadors who are affected by Sickle Cell Disease some questions to raise awareness about Blood Donation and Sickle Cell in the African-Caribbean Community. Each of their stories are unique, yet reiterate the same message: the need for more black blood donors.
Name: Kehinde Salami
When were you first aware of your condition? I had it all my life but first found out when I was 24
What do you do? I am founder/Director of SickleKan sickle cell foundation, as well as a youth worker and work for the NHS recruiting Black blood donors for our various blood drives
What do you do to raise awareness of sickle cell anaemia? I run my own charity raising awareness as well as offer services to the community to support children families and adults affected by sickle cell disease, while also doing work in hospitals schools and other organisations raising awareness, plus supporting those affected by sickle cell
What is an interesting fact about yourself? Was born with a hole in my ear which they say is a throw back gene to when we had gills
Have you received a blood donation part of your treatment? I have never had blood transfusions but my daughter who also has sickle cell has
Why is it important to have more black blood donors registered to donate blood? To meet the demand at the moment as only 1% of blood donors are black, which means that due to sickle cell patients needing blood transfusions the importance of finding the closest match possible means theres less likelihood of blood being rejected or the recipient producing antigens that make future blood donations much more difficult
What are the main symptoms and complications that you deal with from having the condition and how are these usually managed? Main thing is tiredness and fatigue and the mental health side effects to being in pain for prolonged periods of time which can emotionally drag you down. These are usually managed by resting when I can and keeping busy constantly knowing that the stuff that I do is contributing to making a difference to how sickle cell is perceived in general. Knowing that Im helping gives me great comfort
How has sickle cell anaemia affected your life? Negative/positive impact. Where to start, Too many instances to mention, Almost Dying multiple times, Chest Pain, going blind in my left eye, hip pain, swollen feet, hands, shortness of breath and chronic back pain and fatigue.
Personal achievements and triumphs you’ve celebrated despite your condition: Helping contribute to providing a platform for sickle cell patients to have a voice, being apart of the BAME blood organ and stem cell review register as a main grass roots contributor which has now been made as part of legislation
How have you managed your condition and who has supported you through this time? I have actively researched myself remedies and have taken a proactive stance of actively seeking new ways to stay healthy. Gym, change of diet, drinking lots of water and resting when I need to.
Take home message for our readers: I will say we sickle cell warriors are just that, we may bend but never break because we truly are testament that strength comes from overcoming anything sickle cell can put us through to continue going to be warriors which is truly inspiring
1. What is one thing you would want people to know about sickle cell anaemia? That its not contagious and that its hereditary (both parents need to have the gene either via being a carrier of the sickle cell trait or have the full blown condition for it to be passed on.
2. What are the most common assumptions/misconceptions people make? That looking perfectly fine means that you are not struggling internally with sickle cell
3. What would you like health professionals to be more aware of when caring for patients with Sickle cell anaemia? That it takes more than just learning and studying sickle cell, you need to understand that it affects people differently and that the pain can be comparable to gunshot and knife wounds so please have empathy and respect to any patient in your care
4. Does anyone else in your family have sickle cell anaemia/sickle cell trait? Did your parents know if they were carriers of the sickle cell gene? My Dad has sickle cell, and so does my youngest sister and also my daughter has sickle cell, while my mum carries the trait
Why is it important to have more black blood donors registered to donate blood? To meet the demand that is needed, currently there are only 1% of black blood donors registered to give blood, which is nowhere enough to address sickle cell patients needing transfusions as often as every six weeks. Which can be up to 8 pints of blood per transfusion. Gist of it is if we don’t get more black blood donors more sickle cell patients could die
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