Director of SickleKan, Kenny Salami recently caught up with friends and colleagues and held a questions and answers session about Sickle Cell and his personal experiences of living with the disease. It proved to be a very productive and informative discussion. Check out what Kenny had to say.
Question 1: On a scale of 1 to 10, how bad can the pain get and how long does it last?
Kenny: This question is very hard to answer as each crisis episode is pretty different in regards to pain scores, I’ve noticed that my pain threshold has increased over the years meaning I’m able to work through pain that would have crippled me when I first was dealing with this condition seriously. I would say at my worse it would seem as if all your organs and your bones were actually being ripped from your body. This is pain that is likely to leave me in pain bedridden or hospitalised. On a normal day where I can manage the pain its more or less like I’m getting stabbed multiple times throughout my body and the only relief is either sleeping or being heavily sedated on pain meds. On days that I can function like today It's more or less like you’re an old man where I have pain in my joints, and my walking is slower and very difficult. The length (of crisis) varies, it could go one for minutes, hours, days or months. I think the longest crisis I suffered was about 4 months where I was working and just ignored the pain and it just built up till I was in hospital and now 9 months later I’m still recovering from that episode.
Question 2: If you have it will your children definitely get it?
Kenny: No. The only chance that It can be transferred over to your children is if another trait person gets with another carrier of the trait gene, and only then it’s like only a 1 in 4 chance. Let’s say if someone like we got with someone that carries the trait gene that it would probably be a 1 in 2 chance, and of that 1 in 2 chance it’s another 1 in 2 chance of that person getting the full blown sickle cell which is the SS variant versus the "milder" version the SC version. And lastly If someone who has the illness gets with someone that does not have the trait the kids won’t have the illness but carry the genes so basically could pass it on to their children if they themselves get with someone who has the trait which then will be a 1 in 4 chance. Hope that is clear!!
Question 3: Why is it predominantly found in black people?
Kenny: This is because It was a genetic mutation that was brought through Via evolution to combat Malaria which was killing many people over Sub-Saharan and West Africa. Due to Migration and the colder climate, we have sufferers getting the brunt of their crisis as the Mutation didn’t or couldn’t adapt to cold weather conditions.
Question 4: In which ways can it affect your daily lifestyle?
Kenny: It affects everything you do. You are working your life around your illness and not the other way around. You could be missing work, university, social arrangements, business meetings because you are either tired or in pain. Then there is the constant battle over ignorance surrounding the disease which at times can be more damaging then dealing with the illness itself.. However, the positives are coming through we have sickle cell warriors and advocates fighting the cause and bringing their testimonies around the globe.
Question 5: Do you think the best way to eradicate the disease is for people to know their status and have children with those who don't have the Sickle cell genotype?
Kenny Salami: This is a question is very popular and amongst one of the most heated when it comes to survivors. I do not agree with this point of view because it shifts the blame from finding a cure to the sufferer. The issue with sickle cell and lack of awareness yes. So when we do get aware our next step is to marginalise and separate? Makes no sense to me. This point of view you don't see happen with other illnesses who have a history of cancer, leukaemia, heart disease or other medical related illnesses so I don't see how this somehow attaches to sickle cell. So yes I agree with the first part but disagree with the second. What should be promoted is better medication, treatment, healthy eating, understanding, empathy and the need for a global cure. The more people talking about via discussion about the sickle cell issue, the better progress will be made.
Question 6: How can raising awareness help sufferers? What can the average person do to help loved ones who are suffering?
Kenny: Raising awareness is the first step to breaking ignorance barriers right now as well as the local and wider community being ignorant about sickle cell it's also not representative within the medical profession. We still have ambulances who haven't been trained to deal with sufferers at first point of call on the way to hospital and GP's and doctors that are medically inept at dealing with patients they have that suffer from the disease. This awareness can bring about petitions, lobbying and the regulations that can bring about more funding, better training for medical professionals and also a global cure. Now to your second question, the average person can take time to research, listen and understand which is key and by doing that will be in a position where they can help and support, friends, family members, lovers and children.
Question 7: What is the life expectancy for someone with sickle cell?
Kenny: Before it was like reaching late teens. 10 years ago it was 30-40's now I think its projected to be 50-60's but I know many people including family members that have lived long past that age. We have both Ernestine Diamond who is a sufferer who is 86 years young as well as Asiata Onikoyi-Laguda who is a 90-year-old who also is living with the condition. So the myth of us dying young is being broken.
Question 8: Is there a particular lifestyle, diet, alternative form of medicine that can help keep manage the episodes?
Kenny: There are many Holistic and Alternative lifestyle options available to sufferers and should be pursued at their own risk. However due to the different way everyone's body is wired and the different forms of sickle cell (Seven in total) the effects may vary. Eating healthy as in staying away from fried foods, fizzy drinks and turning to eating grilled, oven cooked foods, lots of fruits, water, vegetables, keeping fit by doing light sessions in the gym and also juicing are all healthy starts to combating the condition.
-- END OF Q&A SESSION --
The aim of Kenny’s organisation, SickleKan, is to give people with sickle cell a voice within the local and wider community. His platform promotes awareness of the condition from the perspective of the sufferers. As well as raising general awareness, SickleKan offers essential advice and information to help people with sickle cell to understand the different forms of pain management; compare the impact of medication and explore treatment of the disease and how to deal with its side effects.
-- FIND OUT MORE ABOUT SICKLEKAN --
- Visit https://www.facebook.com/Sicklekan/ for more information on SickleKan.
- To purchase your SickleKan t-shirt or for general enquiries email: Sicklekan.firstname.lastname@example.org
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- Read about Kenny’s recent hospital admission https://www.trainingjournal.com/articles/feature/sickle-cell-disease-do-nurses-and-teachers-need-better-training-and-education