September is SICKLE CELL Awareness month. Everyday is SICKLE CELL AWARENESS. I am going to share my story of sickle cell. I know most of you will let it pass by but hey they say she who sells her illness finds a cure. I have just been reading comments on Voice Newspaper , people sharing their experience. I stopped reading it the comments as I find them not inspiring or encouraging. October will be ten years since I personally encountered SICKLE CELL. I had a phone call from the health visitor saying there was something wrong with Manchilds blood test and he will visit to talk about it. Yes my health visitor was a man! I sort of knew what it was about. The beautiful child that I had just given birth to had Sickle Cell Anemia. It was painful. It hurt. In the ten years that I have been managing with sickle cell and my son, what has been astonishing is not the condition, but we as black people and our attitude towards it. It is phenomenal, the negativity that you get from people who have very little knowledge of the condition but are full of prejudice and ignorance. I am not going to tell you that you should or shouldnt marry someone with sickle cell trait. I personally find so many problem with this attitude. I have come across men who will FLEE from you because you have sickle cell trait and also a son with the condition. I am aware how many black churches counsel people not to marry people with sickle trait or with the condition if they too carry the trait. It is fascinating our ignorance and negative attitude contribute to the management of sickle cell. The shame many sufferers feel and therefore unable to talk about it, unable to find partners who will love them unconditionally or the amount of people who die from this shame. My son is not your average sickle cell sufferer. He has never had a crisis. He is very healthy. Has occasional admission due to colds etc and thats it. However, There is a side effect of sickle cell called PICA, which is an eating disorder, some people are prone to eating non nutrients. Prone to eating everything, foam, rubber, anything that is not food. This for us is very extreme. My son is battling with this PICA severely. I cannot begin to tell you the cost and stress this causes me and him also. Unfortunate for me, we live in the countryside, isolated and even the parents guide to sickle have very little information. I am constantly battling with consultants who are not used to being challenged. He is currently receiving treatment from a psychologist. During the six weeks holiday he was admitted into hospital because he ate a foam from the garden which had been there for years. I almost had a nervous breakdown, the pain of seeing my child battling with this has been extreme. I am sharing my story because I want you to understand that SICKLE CELL does not necessarily mean DEATH. Sickle cell has always made me a better mother. I have no choice but to put the needs of my child first. It hasnt been easy, but it makes me think deeply. Sickle cell is and can be debilitating but it can also make you more conscious of health, your awareness of eating right and emotional well-being is a priority. As a parent I vowed to turn my sons attention to nature. To build him up intellectually, to show him that being a man is not about physical strength, it is about having mental strength. I encourage him to hone in his music talent, a place where he can find peace and solace. I encourage him to read endlessly, cultivate and feed his mind, nothing is impossible. We have been blessed. We put consultants to shame, make them spin around asking does he have sickle cell? Yes he does, but sickle does not have him. I ask one thing of you, as a black person and that is to have a POSITIVE mindset towards SICKLE CELL. Know your sickle cell status, educate yourself and your children and be informed. My son and I are living proof that sickle cell can be positive and managed. Let us as a community be ready to give blood, raise funds to educate and build up the families and children with sickle cell.... They will be leaders of our tomorrow.
Posted on: Fri, 05 Sep 2014 13:29:03 +0000
Trending Topics
Recently Viewed Topics
© 2015