Guest Voice: Moving, literally, in the right direction for sickle cell care
A proper diagnosis and treatment plan changed my life dramatically
Richard Bayliss is 44 years old and has sickle cell disease with hemoglobin SS disease. He’s in the final year of a master’s degree in education, culture, and society at a university in London. He also works part time as a community support worker helping vulnerable adults and those with mental health issues.
I was born in the West African country of Sierra Leone, a small country suffering from poverty and rebuilding from the effects of civil war. Although I saw my mother and father, I didn’t spend a lot of time with them. They weren’t married, and having children outside of wedlock was taboo in those days. I was left with my grandmother to raise me.
My earliest memories of sickle cell disease symptoms, before I was diagnosed, involve constant pain. My limbs were swollen, and any movement whatsoever caused tears to run down my face. No one knew what was wrong with me. I was taken to the hospital and diagnosed with a condition called rheumatoid arthritis because my joints were stiff and swollen. It was noted that the colder weather during the rainy season would make the symptoms worse. My parents coped as best as they could with what they had.
My mother then had the opportunity to come to the United Kingdom to work and study. Without delay, she did what she had to do to survive. She got money and sent me a ticket to join her.
A big change
I arrived in London on a bitterly cold winter day in February. The snow was as deep as my knees. I’d never seen snow before, so I didn’t know what it was. All I knew was that it made my body ache. I didn’t like it. I continued to suffer with pain.
Finally, my mother plucked up the courage to take me to the hospital when I was 10 years old. She tells me that the doctor who treated me was a man of Nigerian descent. The first thing he did was check my blood. That was when I was diagnosed with sickle cell disease with hemoglobin SS disease, as the doctor had suspected.
Things changed. I was put on penicillin V and folic acid, the bread-and-butter staple for anyone living with sickle cell disease. I began receiving pediatric care and saw a blood specialist every three months to monitor my condition. I must say this helped me a lot. I still suffered from sickle cell disease; however, the pains weren’t so severe, and if they did become unmanageable, I was admitted to the hospital and given stronger pain-killing medication to relieve symptoms.
I didn’t want to be different from my friends who played football down at the park on Sundays or went swimming up at the leisure center on Wednesdays, but I was. I didn’t like it, but there was nothing I could do about it.
Time went on, and I got released from pediatric care. I was 18 years old, officially a man in the eyes of the law. I’d have to care for myself. I moved in with my girlfriend. I worked different jobs. Employment needs to be taken seriously, not only for the obvious financial situation, but also for good health. I understand the meaning of health is wealth.
The area of the country you live in also greatly affects the care you get. London has a small but significant Black population, some of whom have sickle cell disease with hemoglobin SS disease or beta thalassemia. (These two conditions are related.) When I turned 18, I was referred to St. George’s Hospital, the largest in South West London. It has sickle cell specialist teams, which include doctors and nurses, pain management practitioners, physiotherapists, nutritional experts, and massage therapists. I thank God for the support, love, and care I’ve received from these people. Since I first made contact with them, I have gained a wealth of information about things I wouldn’t necessarily think about otherwise. I feel truly blessed!
New treatments and therapies are being developed every day for people with sickle cell disease. I take hydroxycarbamide daily. The medicine was initially designed for cancer patients, but sickle cell patients have also noted improvements in well-being while taking it. Stem cell therapy and gene therapy are also being developed for sickle cell patients. It’s all very exciting!
What comes next? Where will the future take me? I leave it in the hands of God, for I know that whatever it is, I will not be afraid. God is good.
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