Every year on June 19th, the world acknowledges the global pandemic of Sickle Cell Disease. This year I asked a few friends in Zambia if they would share their stories. Here is what they have to say:
Lonice is the mother of six children. Her second-born, a son, had SCD and died in 2014 at the age of 21. Her fifth-born, a daughter who is now 17, also has SCD. Her youngest child has recently been confirmed to be a carrier of the sickle cell gene – she has Sickle Cell Trait, just like both of her parents and likely at least one other of her siblings. Here is what Lonice has to say about being the mother of children with SCD:
“Being a mother of sickle cell children is not an easy duty. You cannot move freely. You will only be thinking of how they are, whether they have taken their medicine or not, or whether they are putting on warm things or not. These children need to be warm, and the time here in Africa where malaria is common, they need to be malaria free. They need to take a lot of fluids, take folic acid every day, not to be over-worked, not to be over-excited or sad. They need medical check-ups and a good diet.”
Peter is the father of four children. His first- and second-born children, daughters, both have SCD. His first-born’s SCD is more severe; she consequently has more sick days and spends more time in the hospital. Here is what Peter has to say about being the father of children with SCD:
“Living with children with sickle cell is not that easy, especially in a third world country in Africa. My family used to worry a lot about the frequent admissions to hospital. This was the order of the day, but not anymore. I, as a parent, did not know my two daughters, Febby and Kuwunda, had this condition. Regular admissions at various hospitals revealed they had sickle cell. From then, we as a family have struggled to give them home-based care when they experience attacks. This has made them enjoy lengthy moments of being away from hospital.
“We have accepted their condition and realized we have to prevent situations that may lead them to experiencing severe crisis. We encourage them to increase the intake of fluids and water to keep the body liquid levels normal. This helps prevents the collapse of blood vessels and capillaries to sickling of cells. We give them a tablet of folic acid which we receive from the hospital. This drug helps them a lot. Taking of the drug requires the patient to be aware that it’s their duty to ensure they take their health to heart. As parents, our task is to encourage and remind them when they seem to have forgotten. One other very important thing is to ensure they wear warm clothing. This helps in preventing their bodies from coldness. We also strive to feed them on a balanced diet. Some pumpkin leaves, nshima, bananas, beans, fruits help a lot. Toast bread and avocados have as well proven good for them.
“Encouragement to parents like me with children with sickle cell condition is not to give up and shout at the patients when in crisis. We need to try to ask them to take their drugs if administered by the physician. Do not try different drugs without doctor’s instructions, this is dangerous and may put the patient’s life in great danger. Share the condition of the child with the school administration, if school going. This will make them understand the patient and open room for their acceptance by even friends. We use water bottles with warm water during cold conditions as they sleep to keep their bodies warm. Encourage them to do exercises to keep themselves active. This allows their blood to flow freely and also keeps them fit and healthy.
“Life with sickle cell is not a punishment from God. Neither is it witchcraft. You can make a difference by doing something about it as a family. Help reduce much pain and suffering in people with sickle cell by taking and practicing preventive measures. Remember, prevention is better than cure.”
Febby is Peter’s first-born. Here is what she has to say about living with SCD:
“Hi everyone. My name is Febby. I was born on the 26th July 2003. I would like to tell you about my sickle cell experience. I was only a baby when my parents discovered that I was a sickle cell patient. I grew up knowing that I have it. The times I have these attacks is when it’s so cold or when I don’t have enough water in my body. The doctor gave me some medicine called ferrous sulphate. I was told to take one each day by the doctors, but I really don’t like it when I am sick. My whole body aches when I am lacking water; it feels like my body is being ripped to pieces and I don’t like it. My joints pain that I even fail to walk, I have to be taken to the bathroom. It feels kind of bad, so that is why I have to take my medication as soon as I have a feeling of something like being sick. Sometimes I feel good when being given a very good massage, but if someone is massaging me I don’t like them to stop, because the pain will worsen and, if it does, I will end up crying. In the end, I will find myself stuck in the hospital and I really get afraid when I see people losing their loved ones.
“What I think:
I think it’s hard to be one of those people who lose family members. That’s why I pray to God to help me get well soon because I want to become a doctor so that I can help others not to have experienced what I went through, because no one will ever want to have it. If you have one of your friends that have it, make sure to give them the attention they need and make them feel they’re loved.
“Life in School:
Life in school is very good because when you’re learning you’re getting your mind off the fact that you’re still a sickle cell member. But don’t feel bad if you have it; just make sure you have proven your worth to the world. Sometimes I get sick when I am in class. I miss out and it takes time for me to catch up, but I thank God for my intelligence, and sometimes I have better grades than others. I just pray that I will see my friend soon. I felt like there is no hope, but not until I found my best friend, Paula Wellsly, and she’s always been there for me. I love you, Paula. Thank you for all the help you have given me and I promise I will never give up. Thank you to my biggest fans. Love you all.”
Thank you so much to Lonice, Peter, and Febby for sharing your stories and encouragement!