"By God's Grace I am a living testimony of Sickle Cell Disease(SCD) and I tell this story as a 28 year old survivor who has practically being to the deepest parts of the disease pit and back. As a child, living an everyday life with SCD was not easy. I couldn't live a normal life as most of my childhood days were spent in hospitals. My early school days were almost marred by absenteeism and this made my learning process somewhat slow. Whilst facing the frequent pain of bone crisis, I had to put in so much effort to keep up with school work. Thank God for my family,friends and teachers who served as back bone pillars, to give me all the support I needed at the time. Although most of my classmates then saw me as the odd one out initially, which made things rather hard for me, some of the more mature ones eventually got to understand and in their own way became quite supportive.
My higher level was a bit better because I already understood my body to an extent, so I was able to take care of myself health wise as well as,social too. I also had to learn how to love myself and put a smile on my face despite the pain of crisis I was going through.That was the only way I could survive. When I graduated from school, I could not get a job
because I was not physically strong enough for the opportunities that came my way. Hundreds of thousands of healthy and strong Nigerians were jobless, talk less of what some will call a miserable sickler like me. This situation sent me down the dark path of self hate and for almost two years I was down with depression. I thought of giving up but thank God for music(worship & praises songs). Every time I sang, I miraculously found the inspiration to carry on. I had shot everybody out and staying all day on my bed doing nothing was like
hell. I had to wake up from my slumber. I had to face my fear and eventually decided to go into what has now become my passion. I started catering and baking. Although it was and still can be stressful but life itself is stressful, isn't it? I had to tell myself, my family and friends this because of initial worry that I would breakdown. I had to however, take my
stand and face my mountains. Thank God, today I have my own business..
With regards to my health, I try to maintain regular water intake per hour and
before bed. My diet is mostly conventional, with good consumption of
fruits and vegetables every week. I bake but I try to avoid much junk food. I
don't take alcohol. I do not smoke.I have a limitation on physical
exercise and have not explored my stamina, so I don't engage in activities like swimming, running, jogging or the likes. I enjoying travelling though; if you want to regard that as a hubby. Sickle Cell Crisis is now down to 1 or 2 episodes a year. Some people say I am lucky,as I have not required blood transfusion at all. Pain is off and on but then I take simple pain medications which have really been helpful. I have not had any addiction to pain killers as I have noticed with a few other persons with the genotype.
My greatest challenge care wise, has been financial
constraints. I know that there are better modalities of care out there but for now, I can only make do with maximising friendships and taking maximum advantage of the relationship with people I meet at various sickle cell group and gathering. The support has been amazing. To every other person with the genotype, I say hang in there. There is better life here on earth beyond all the pain and together we would find it".
-ANONYMOUS.
Via Bone Marrow Transplant Technology and suppression of the immune system, experts now believe that though expensive at the moment, the cure for SCD is now a reality that many thought will never come. A lot of research is currently ongoing ,as to how cheaper and less complicated cure can be achieved. Hopefully, a generation of sickled red cells will permanently be replaced by normally shaped (biconcave) red cells and the love story to be told will be, happy from pain, forever after.
👀: indianexpress.com |
REFERENCES:
* NHS| Sickle Cell Disease
* SICKLE CELL ANAEMIA NEWS| Activities Underway In US For Sickle Cell Disease Awareness Month
* World Sickle Cell Day
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