Last autumn we interviewed Kehinde Salami, founder of SickleKan, for our patient newsletter, Red Cell News. He talked about the charity he founded to raise awareness of sickle cell and shared his experience of managing sickle cell. Find out more about the charity and Kehinde by reading the full interview below:
Tell us a bit about yourself and your experience of sickle cell
Hi, my name is Kehinde and my experiences with managing sickle cell have been up and down, as I didn’t know that I had the condition until I was in my mid 20’s. At that time I had a very serious sickle cell crisis episode while studying for my first degree in Manchester. I was rushed to the nearest medical centre to be told that I have the condition. I slowly remembered back to my childhood and the moments that I blacked out involved severe fevers, problems with fatigue, and temporary blindness. Now I understand that I was very lucky not to have had any serious or fatal episodes that could have killed me, considering that I wasn’t taking medication or precautions to live with the condition. Besides that I have had mild to serious and life threatening sickle cell crisis episodes and just recently had to have an operation to restore sight in my left eye. This was due to a sickle cell episode that occurred in my eye, causing me to be blind for over a year and a half until it was corrected. I will say due to the unpredictable nature of the disease that it’s a daily battle and I thank God that I’m able to live and tell my story while helping others.
Where did the idea for your charity, SickleKan, first come from?
Wow, I can remember the answer to that question quite clearly. This was after, let’s say, the third of my serious back to back sickle cell episodes in November 2015. I had just had two life threatening episodes and had lost vision in my left eye and felt isolated, alone and on the verge of depression. Friends and family just couldn’t understand the extent to which the condition was affecting me. I sometimes felt like a slave to my body constantly breaking down and sometimes considered overdosing on the medication to ease the pain. However, something clicked in my head and I started looking for information online and support groups and decided to be bold and create the SickleKan movement to increase the support network, to help sufferers like myself have a voice, and to share my experiences to encourage others to also speak about the condition, whilst breaking the common misconceptions about the illness. I started with Instagram by posting facts about sickle cell and my experiences, which led to people reaching out across different countries. Then I decided to post on various platforms and got support from so many people affected by the trait as well as the full blown condition and we just gradually collaborated to have the charity that we have today. Every day I am thankful for the support of the people that helped us from the start and are continuing to till this day.
What are SickleKan’s aims?
Our primary aim was to provide a platform for patients like myself to have a voice, share experiences and tips on managing the condition, as well as help support patients like myself with the condition. We also wanted to support other institutions such as hospitals, schools, colleges, universities and businesses use adaptations and recommendations to help facilitate service users/students and employees in their care. We want to also provide research to help improve medicines and cures as well as support and talk about the often forgotten medical effects of dealing with such an intense illness.
What is your role with the charity?
I am Founder and Director of the charity alongside my Co-director Iman. But most importantly I am a patient affected by the condition who is also the father to a daughter that has the condition. With that and my youth and community work experience, I would like to see myself preferably as a mentor to adults and children that have the condition. However, Sicklekan is bigger than me and we also have Co-director Iman who has helped me run this charity with her valuable experience, as well as volunteers and other organisations that have helped us along the way.
Has founding SickleKan impacted on how you experience sickle cell personally?
Most definitely it has; as a small charity we have sometimes tried to do so many things at once that it has led to exhaustion, being overrun due to our passion to help as many people as possible. I have attended events while having a sickle cell crisis and have also had to take very strong pain killers to keep very painful episodes at bay while working on projects and meeting people. However I feel that knowing my body’s limits and the support and care received from the staff at King’s College Hospital Haematology Unit has enabled me to do more for this charity than I would have in the past. The work is challenging but I wouldn’t want it any other way and the team constantly strive to do what we can to help others with the condition, especially children so that they can have a better way of life.
Your daughter also has sickle cell disease – do you have any advice for other parents of children with sickle cell?
What I would say is that it’s a joint effort with the parents and the children and to ensure that you are aware of the triggers that cause a crisis episode. The key here is to work with your child while empowering them to have the self-confidence to not only talk about the condition so family and friends can support, but also understand that they know that with the correct steps in place they can live as normal a life as possible. The importance of instilling this confidence early is key and will ensure that their future is bright, while also improving the understanding and support for young patients – which can only be a good thing.
What are your plans for the future of SickleKan?
Plans for the moment include continuing to expand our team so that we can do projects locally, nationally and internationally. One thing that we must understand is that patients in other countries don’t have the same level of support or access to medication that we do so we will try to bridge the gap to see if we can help improve that aspect by working with the relevant charities. We also plan to increase the projects that we are doing here including a school program, community projects and even maybe a TV channel, community centres and regular patient advice forums at hospitals, just to name a few. However our vision for the future is very optimistic, which is the reason why we are looking for businesses, organisations and volunteers to help us to reach our goals.
Finally, how would readers of this newsletter get in touch if they wanted to find out more about your charity?
We can be contacted by telephone via 02033252832
Email Sicklekan.info@yahoo.co.uk
We are also very active on social media via Twitter, Facebook and Instagram under ‘Sicklekan’, while our website address is http://www.sicklekan.com/
We also have a gofundme and paypal pages http://www.gofundme.com/sicklekan and www.paypal.me/sicklekan
Thank you for sharing your experience with us, Kehinde!
This interview first appeared in Red Cell News Issue 9