Living With Sickle Cell: Sadiq's Story
Like parents, children with sickle cell disease also have times when they are afraid, insecure, or feel sad. I was introduced to Sadiq, a 20-year-old boy who lives in Nigeria and lives with sickle cell type SS.
Sadiq knew from an early age that he had sickle cell disease, and was made aware of the rules of life at an early age. He could not always do certain things his friends did, and he learned more there. He has even found a sport that is pleasant for him and where he must take less account of his health condition. Horse riding! It makes him incredibly happy when he tells me about how he rides with his friends.
Dreaming of becoming an engineer
Sadiq has a dream, and that is to become an engineer. He is in his second year of college studying Chemistry.
It often happens that he is in class and no one notices that he has a pain crisis. Despite his condition, he ensures that he takes as many classes as possible and misses as little as possible at school. When he is in pain, he drinks a combination of pain medication to be able to get through the day. And if cannot take the pain any longer, he stays at home, or he goes to the doctor.
Barriers to accessing healthcare
Going to the doctor is difficult for him because it costs a lot of money and he doesn't always get the treatment he feels he should get.
When he shared this, I sat up as a mother. It is always special to learn about the experiences of patients themselves, especially when a child takes you into their world of experience. I was impressed by the way Sadiq explained what he feels and experiences, and what he wants to see different in the hospital.
Stigma and disbelief
As a 20-year-old young man, Sadiq is increasingly confronted with the fact that the nurses do not believe him when he indicates that he is in pain. Sometimes he gets the feeling that they see him as a drug addict because he keeps asking for heavy pain medications. For Sadiq, it makes sense to go to the hospital for heavy pain medication because he uses the normal pain medication at home, and when it is no longer bearable, he goes to the hospital for heavier medicines.
How can we raise awareness?
This conversation makes me think about how such a child or adult feels. Because I believe that nobody goes to the hospital for fun. You go to the hospital because you see no other way out. Can we all think for a moment about how we can work together to ensure that our children, brothers, sisters, and others with sickle cell disease have a pleasant experience in the hospital? What can we do to raise awareness for our caregivers in the hospitals?
Can you identify with this or do you want to share your story?
Did you go to the ER within the past year?