Interview with Philip Udeh
Do you think Sickle cell is misunderstood by the Black community?
Yes. Definitely. Many people do not know what is but they ‘know’ that it’s bad. They don’t know the mechanism of sickle cell.
There is a misconception about it, and sickle cell has a bad stigma attached to it. There is a spiritual thing associated to it; like a curse. If you ask if someone has it in the family they will say ‘No!’ with pride!
It has become spiritually negative. Really sickle cell is a genetic disorder and if we knew about it we can mitigate sickle cell. Even if a person has it they can improve their quality of life. To be honest even people with sickle cell do not understand it. They know how the disorder makes it hard for oxygen to get around the body but they do not know how to improve their quality of life. Many take morphine which is an addictive drug with negative effects on the body, altering the persons receptors of pain.
This is the reason why I previously launched Sickle Success to educate the community. Education is essential and it is important for everybody to see the correlation between a healthy lifestyle and how they function. As Africans we are not functional because of our lifestyle, and people with sickle cell can’t afford to have a poor lifestyle.
Years ago, normality for me was drinking alcohol, eating junk food and having sexual interactions all of which lead to premature health conditions. As humans we separate our mortality from our lifestyle, we do not see how the way we live having any correlation to when we die. As a result, our quality of life is so poor. For people with sickle cell the implications of this is even worse and it is even more important to drink more water, have a vegetarian diet because our African diet is nutritionally deficient. The jerk chicken, jollof rice and other processed foods do not help.
People say they want, and even need to eat red meat but very basic research on Google shows how detrimental it is.
Sickle cell can bring different complications too. Personally, I went through a stage as a child when I was sick, and managed to avoid poor health in my teens. Then in my twenties suffering from pneumonia and kidney failure. I went through a period of not telling people I had sickle cell, not going for blood tests because I was not interested.
My starting point was trying an African yoga class. A lot of us are disconnected from our body and only when we suffer server pain do we notice.
Yoga was a first step, 3 days after I was still aching and felt like I did a lot of work.
I tried martial arts and after the second class I had a crisis. At 5am I was driven to A and E. When doing vigorous exercise you see what is truly going on inside. The training meant I had to clean up my lifestyle to make my body function.
When having a crisis the use of movements and breathing can help to regulate what’s happening in the body. It helps to alleviate stress on the body and clear blockages.
When at a friend’s wedding last year the guests jumped in the pool at the end. I did not participate so 3 men picked me up and threw me in too. I had to get out of the pool and out of my clothes. I needed to get into a big towel, had a hot shower before going to the balcony. I did a kama (series of movements) 10 times in pain.
I focused on my breathing and movement, took some water with Anadine extra and then slept. After I felt 50% better, the next day I was 70% better, and the day after that I was normal again.
The martial arts helped because it means you become used to pain.
The term ‘Catch the nettle’ is often used meaning to try and catch the crisis in the middle of it before it gets you. I developed methods to do this. For example the principle of Thai Chi is to use meditation and movement to make space for the body to allow oxygen to flow giving you respite from the pain
How do you help someone with sickle cell take control of their situation?
You must be mindful as it is easier for people to play the victim and not the hero. It becomes a way to form part of their identity of victimhood and the person adopts that role. This can become a very negative cycle.
The worse person can be the mother. You do not want someone there speaking about the pain. Do not allow the person with sickle cell to play the victim card. Whether they be a child or loved one you must not treat them like a victim because this has damaging effects on their interactions in the world.
You should not allow them to wallow in self-pity too.
The power is in their hands to be proactive and learn how to cope. They have elements of control over their life and they must use it.
What do you do in the community to help those who have sickle cell
I work on projects related to this cause and I am currently on the board of the Sickle Cell Society and continue to help the community.
Also, I successfully delivered Sickle Success which was a national project promoting health and wellbeing in 2014. This included yoga teaching, vegan food and a whole manner of things based on a educating young people. The programme also included discussions on the powerful impact of yoga and breathing for the times of crisis. Sickle Success enabled people to engage with their bodies, because we are what we eat. It makes us who we are on a physical basis. This can help us to be physically stronger. We want to address the limitations people put on themselves starting with aspects of their lifestyle.
We must remember sickle cell manifests itself differently. I know the type of sickle cell I have manifests itself differently to others. Everyone has a starting point and when they accept that we can begin to improve.
30th Sept 2017