I am Nora Brown, 36year old Christian mother, an entrepreneur and a sickle cell warrior. It’s my hope to create enough sickle cell awareness to help our children and youths. I was diagnosed with sickle cell anaemia at a tender age of 11 months as mummy told me. Her little baby girl started crying continuously and all she could notice were swellings on my hands and feet. She had to rush me to Bamenda general hospital, watching as her tiny baby girl was going through a roller coaster of pain and agony. It has always been my dream to spread the awareness of the disease and educate people living with the condition by creating a support network for carers and parents of young warriors.
The big question for today : WHAT IS SICKLE CELL ANAEMIA?
Sickle cell disease is the name for a group of inherited conditions that affect the red blood cells. The most serious type is called sickle cell anaemia. People with sickle cell disease produce unusually shaped red blood cells(Haemoglobin S) that can cause problems because they don't live as long as healthy blood cells (Haemoglobin A) and they can become stuck in blood vessels. Sickle cell disease is a serious and lifelong condition, although long-term treatment can help manage many of the problems associated with it.
Now that we already know what sickle cell disease (SCD) is, we shall be moving on to my next question :
People who suffer from SCD inherit two abnormal Haemoglobin (S haemoglobin) genes, one from the mother and one from the father. SCD, in all its form, at least one of the two abnormal genes causes the sufferers body to produce Haemoglobin S genes. (Haemoglobin is the protein in red blood cells that carries oxygen. It normally has two alpha chains and two beta chains).
Now let me continue, do we know that SCD has got difference types and forms? Lets look at the various types and their effect on it sufferers
Haemoglobin SS disease is the most common type. This is when a person inherits copies of haemoglobin S gene from both parents. This is known as Hb SS. Individuals with this type experience the worst symptoms at a higher rate.
Haemoglobin SC is the second most common type od SCD. This is when you inherit Hb S from one parent and Hb C for the other parent. Individuals with this condition have similar symptoms to those with Hb SS but anaemia is less severe.
Haemoglobin SB+(beta) thalassemia is another type of SCD. This one affects the beta globin gene production. Here the size of the red blood cell is reduced because less beta protein is produced. Symptoms are not so severe in this case.
Haemoglobin SB 0 (Beta-Zero) thalassemia is the 4th type of SCD. It also involves the beta globin gene. It has similar symptoms to Hb SS anaemia. However, sometimes the symptoms of Hb SB 0 are more severe. It is normally associated with a poorer prognosis
Then we have got Haemoglobin SD, haemoglobin SE and haemoglobin SO which are more rare and usually don’t have severe symptoms.
Finally we have sickle cell trait. These are people who inherit a mutated gene (haemoglobin S) from one parent. The may have no symptoms or reduced symptoms.
Aside from the types of sickle cell you have various levels of it's effects as well. We have some warriors who are silent sicklers , they hardly or never have crisis at all, then you have the chronic sicklers who are constantly in and out of hospital with a sickle crisis or one complication after another.
We have looked at what is sickle and how can you get sickle cell anaemia. Now lets look at one of the Key problems associated with the disease: Sickle Cell Crisis.
What is a sickle cell crisis?
A sickle cell crisis occurs when sickle-shaped red blood cells clump together and block small blood vessels that carry blood to certain organs, muscles, and bones. This causes mild to severe pain.
Imagine you accidentally drop something into the sink. If it’s a tiny object like a coin or grain of beans, its not an issue. You let the water run and flush it through. But if a large stone gets down the drain it gets stuck into the pipe. Now you have a larger problem to deal with. That’s exactly what happens during a sickle cell crisis. Because red blood cell aren’t round but are sickle in shape, they don’t move easily throughout the blood vessels. They get stuck in the small vessels at different parts of your body and this causes serious episodes of pain. It is a very severe attack and can cause organ damage.
The pain can begin suddenly and can last for hours or several days. You might have pain in your back, knees, legs, arms, chest or stomach. The pain can be throbbing, sharp, dull or stabbing.
You might be able to treat your pain crisis at home with medicines that you take by mouth. If these medicines don't control your pain, you can't keep fluids down or you know that you're having severe pain, you might need to be treated in the emergency department. If your pain still isn't controlled or you have other problems, you might need to be treated in the hospital.
If I may recollect, I began to understand about sickle cell at the age of 5. I was living in Yaounde with my mum, dad and grandma. I remember how I started crying of pains in my arms after running around in the playground and my mum was called to take me home. I remember how bad this pain was. My mum kept massaging me with warm water and a towel and gave me an injection that hurt so much. I remember much later in the day, mum had to put me on drips.
I can’t even remember if I ever had a 10th birthday party as I was always very sick. All I can remember is how I made excellent results at the common entrance exam and first school leaving certificate and how I badly wanted to go into a boarding school, but mummy kept saying No No No. After a lot of insistence, I was admitted into PSS Mankon in Bamenda. I was super excited and went without sleep. As the months went by, my trunk was already full of all the goodies you can think of. My uniforms were ready until this faithful day about 2 weeks to start of term, I fell seriously sick with a crisis. I needed blood. I was in hospital for almost a month and I began to understand why mummy didn’t want me to leave home. So, all my dreams of boarding school were shattered. I wasn’t happy but needed to accept it.
As young as I was, I felt trapped in a sickle body that always betrayed me with pain. I couldn’t do Physical Educations (PE) without getting tired or feeling pains afterwards. On this faithful day as I ran a race during PE, I became so breathless that I fainted. From that day my school file was flagged, and I was exempted from PE. I felt very sad and cried for days.
I was very friendly and pretended to be super confident and strong, but I was covered with so many insecurities. I was tired of being called a sickler, friends always asking me why I am always sick etc. Until this faithful day I asked my mum why I was born this way and that I don’t want to live anymore. That I am tired of being sick. Mummy looked deep into my eyes and went to her room. I guess she was torn apart. The following day she told me to get ready in the morning that she wants to take me somewhere. I was excited, and, on our way, I saw we were heading to CUSSE hospital in Yaounde, where mummy works as a nurse/midwife. I asked, mummy we are going to the hospital. She said yes, I want to show you some people. Mum took me to the sickle cell ward. As we walked in the ward, I saw children with swollen heads, children with crutches by their bed and others with bandages on their feet. The sight was scary. When we left the ward, mummy asked me, do u love who you are now? I answer, “Mummy, I am not sick anymore”. That was the beginning of accepting who I am. These episodes of pain continued into my early twenties until when I moved to London.
As soon as feet touched the London soil, I rebelled. My family thought I was rebelling against them, but I was rebelling against sickle cell. I was keeping late nights, wearing light dresses in the winter and drinking alcohol and every single time I did these things, pains arise, and I went back into hospital. Because of my refusal to wear gloves and a hat in winter, I spent my first Christmas in hospital. Clubbing was another thing for me. I loved doing it but you know dancing, drinking and sweating makes me dehydrated. Hence dehydration with light clothing during winter only meant ne thing: crisis. I just got to accept it that whatever I do, sickle cell will still hit me. So, I might as well just keep having my fun. I always had my hospital bag packed before I went clubbing. When finally told my friends my health situation at the club this faithful day, they became worried and wanted us to immediately. I refused, and we partied all night, but a crisis started while I was still at the club and they had to drive me home and I called the ambulance.
I carried on until this faithful day when I fainted whilst in class and was rushed into hospital. Bam I was pregnant. Was torn between two worlds. Remain pregnant and go through the ordeals or abort. I was still a young girl wanting to explore more and more. In the deepest part of my heart as I tried to think about it, all I could hear were the words that had been spoken to me : she will not live long, she cannot have a child, she is a walking co**se, all the mockery in school. That gave me the boost to the best choice I ever made in my life. That was keeping the pregnancy. I must say it was the most difficult of my pregnancies. I fought so hard for survival as I was in and out of hospital and I stayed in hospital continuously from the 6th month till delivery.
Sickle cell has taken to the world of insanity and back, it has kicked me into depression that I have wished for death sometimes. It has pushed me to the world of su***de. It has really pushed me so far that I shut everyone out of my life.
My closeness to death were
. Heart stopped beating and was declared dead. Mummy held my hands and begged God to bring her baby girl back 1995
. Continuous swollen legs for 3 months looking like elephantiasis 1999
. Almost lost my life having my first son. Had to be induced so I could be saved. 2003
. Bone infection – Osteomyelitis that put me house bound for 9 months 2012
. Recurrent leg ulcers 2015
. I have battled Morphine addiction.
. Bone infarct that almost took my life October 2017
My life has not been easy but I am thankful to the Almighty God for blessing me with such amazing support network. My siblings, family friends have been phenomenal in always being there. But most importantly I praise Jehovah for blessing me with a rock for a mother. Her believe and trust in the Almighty God has been my source of comfort each time mum wasn’t there. She will go to the ends of the world for me. She was my legs when my limbs failed me, eyes when painkillers blinded me and my strength when I was weak. It saddens my heart she passed away 19 May 2015 without enjoying the fruits of her labour. She will forever be my icon.
The Voice Of Sickle Cell
Depression is a normal phenomenon they say with any chronic illness. I may battle depression for the rest of my life but one thing I know is that every warrior is my friend and I want to use my sickle cell journey to help others.
I want to be the voice of sickle, I want to motivate and help the sickle children and youths so they don’t go through the same ordeal I went through. I understand crisis will come, infections and complications will take me off balance sometimes but if there are people going through pain, I want to be there to counsel them, be there for them so they can make better choices than I made.
Sickle has taken so much from me, it has taken men I loved away because they were AS, it has taken job opportunities, changed my fashion style and so much more.
But what Sickle Cell has given me is unimaginable strength and determination to live and achieve against all odds. It has given me a strong sense of empathy and willingness to always help others
Watching my two sickle cell warrior brothers die in the battle field, made me stronger and stronger by the day. I constantly felt if I should die, I will be letting them down.
In honour of the two fallen heroes in my life and my iconic mum, I am launching a foundation called EMELI’S SMILE (Emeli is my middle name) in JUNE 2018, the month we celebrate the world sickle cell day. It is my dream to make a difference in the sickle cell community in Cameroon but in Africa as a whole.
