Margaret ‘Peggy’ Odoyo, 29, has grown up with sickle cell anaemia; she shares her experience with MATILDA NZIOKI
Tell us about your condition?
I was born with sickle cell anaemia. I was diagnosed when I was only three years old. The tests that were carried at the hospital showed that it was sickle cell anaemia — it’s a disease of the blood. It gets its name because a person’s red blood cells are shaped
Margaret ‘Peggy’ Odoyo |
Round is the healthiest shape for red blood cells (or RBCs) because they can move easily through the body. RBCs carry oxygen around your body, and every part of your body needs oxygen to work properly.
Anytime a person’s body doesn’t have enough red blood cells, it’s called anaemia. When the cause is the sickle shape of the RBCs, it’s called sickle cell anaemia. I had a good doctor who helped me to manage it.
How was it growing up with the disease?
When I was in high school, I was teased about my yellow eyes. One gets yellow eyes, as circulation of blood does not go to the eyes properly. Only a few close friends knew of my condition. We later learned about the condition in a Biology class and some asked me if that’s what I was suffering from but I denied it.
I have grown to realise that it’s not a difficult condition to manage. Like many ‘sicklers’, my appetite is low. I think that is why most of us have slim figures.
How can you know if you have sickle cell anaemia?
One inherits the abnormal haemoglobin from parents if both or one is a carrier. Sickle cell disease is not contagious. You are born with the sickle cell haemoglobin and it is present for life. Your doctor can run a simple blood test called the haemoglobin electrophoresis to test if you are a carrier of the trait or if you have the disease.
Where did you go to school?
I studied IT (Information Technology) up to IAD (International Advanced Diploma). I went to Buruburu Girls’ High School and Apostolic Carmel Secondary School. For my primary education, I was in Our Lady of Mercy Shauri Moyo School on Jogoo Road.
Can a student survive boarding school with the condition?
It’s not hard. One only needs to manage themselves well. Because your immune system is low, one is prone to infections. ‘Sicklers’ need regular check-ups, as they do not have enough blood. These include dental and eye check ups. A person’s body knows that the sickle cells aren’t good, so it destroys them quickly. The body can’t make new blood cells fast enough to replace the old ones.
For anyone going through a condition, learn to view yourself positively and never think of yourself as lesser of a person.
What steps have you learnt that are important in managing sickle cell?
On top of regular check-ups, one should take their medication religiously. Water and fruits are also important for a sickle cell patient as they enable the blood cells to move easily. Extreme cold and hot weather causes the crisis (when sickled red cells stack up in narrow blood vessels known as capillaries, normal red blood cells are not able to carry oxygen to tissues leading to injury or death of tissue cells.
Someone with sickle cell disease will experience pain during this process known as the sickle cell crisis). Since a ‘sickler’s’ immune system is low, they need to be careful, for instance one has to take anti-malaria medication when travelling to malaria-prone areas. They should also avoid doing strenuous work. It’s not advisable to push yourself.
How is it like having to take medication throughout your life?
I take medicine daily and it can be challenging, but you get used to it. If you don’t take it, you will fall sick. The medication I take helps to boost blood, reduce chances of suffering a crisis and infection. Some tablets cost Sh30 each. I go for check up every three months and I’m used to my condition.
What do you go through when you suffer a crisis?
I get chest and abdominal pains. It happens that when the sickle cells get stuck, especially inside smaller blood vessels. This keeps blood from flowing properly in the body, which can cause a lot of pain. Important organs like the brain, heart, and kidneys need constant blood flow to work properly.
Taking water helps to ease the cells’ movement. The crisis can last for an hour or longer. It’s important to get immediate medical attention. If you delay treatment, you will have to be admitted in hospital and the worse case scenario is death. If one is treated immediately, they get discharged and get on with life as normal. You can be writhing in pain one minute and totally at ease after a while in the doctors’ room. People who don’t understand usually think that the afflicted person is pretending.
What has your hardest part been dealing with the condition as an adult?
Going to hospital where the health workers are not fully familiar with the condition. When you suffer pain episodes and visit a hospital, you need immediate attention because the longer the delay, the more the pain spreads to other parts of the body. When I’m in Nairobi, I’m better placed because whenever I start to feel funny, I call my doctor and by the time I get to hospital, he is ready with the required medication, which helps me deal with the crisis and get over the pain faster.
How rampant is sickle cell anaemia in the country?
We don’t have exact statistics yet. We are currently working on that at the foundation.
This year, we want to focus on training people about the condition by going to schools and working institutions. For example, if teachers understand the condition, they will know how best to handle pupils who are affected.
We are also working with the Ministry of Health to have some policies implemented.
We would also like people to go for testing so they know if they are carriers. That would make them know if there’s a possibility for them getting a child with sickle cell. We hope to start marking the World Sickle Cell day on June 10. Due to lack of funds, we rarely hold events to celebrate the day.
Tell us about your background
I’m the last of four children. I’m the only one with sickle cell anaemia among my siblings.
What do you do?
I work as a volunteer at the Children Sickle Cell Foundation.
Tell us about the foundation
Its aim is to create awareness. People rarely talk about sickle cell anaemia. We try to help affected people and especially parents, to deal with the condition.
We meet every month, the members are few but they have been increasing by the day. We discuss and share our experiences, which widens our scope on the disease.
One is able to see how other people have coped with symptoms of the condition. We are a support group and we try to make the condition bearable to the affected through information. We educate parents and inform them that this is a condition and one can live with. Some parents hide their children, and they end up dying because they do not come out to seek medical attention. There are many people, especially in the rural areas, who do not talk about the condition.
I am glad I can use my story to encourage someone. I live a normal life; I go to work and go out with friends like everybody else.
How does the foundation get funding?
We rely on well-wishers. Parents with children suffering from sickle cell anaemia contribute membership fee too.
What’s your ambition?
I would like to see a sickle cell centre where patients can walk in and get treated almost immediately or even a section in our hospitals dedicated to sickle cell set up in future. The longer one waits for attention, the more they are prone to infection.
