Camille Daley’s Sickle Cell fight

FOR most of her childhood years, sickle cell patient Camille Daley endured both physical and emotional pain owing to the debilitating disease. But instead of allowing it to control her life, it became the catalyst that led her and a colleague to form the Sickle Cell Support Club of Jamaica (SCSCJ), which now helps others like her deal with the illness.

Daley was just 19 years old and was pursuing her first degree at the University of the West Indies (UWI), Mona Campus, when she and fellow sickler Morette Wright decided to form the group in 1992. Both knew firsthand the stigmas and fears surrounding the disease, and also the level of depression at times experienced by some of those affected.

“We were both students and we met while we were doing our first degree on campus and both of us were very concerned about the social situations of sickle cell patients. What we found was that a lot of them lacked family support,” she told All Woman.

Eighteen years later, the group still commits to its core function of advocacy and providing emotional support for patients. However, it still struggles with some of the challenges that plagued it from its genesis, the primary one being getting patients to reveal their status.

Having experienced teasing as a child, Daley understands the reason for this, and through her group tries to pacify some of those misconceptions surrounding sickle cell.

“We recognised that it was very important for us to do our part to try and raise awareness, to try and reduce some of the myths and misconceptions surrounding the illness because they are many. Some believe that the disease is contagious and you are going to be dead by the time you are 20,” she said.

But at 37 years old, Daley has proven that the disease is not a death sentence. Although she had to miss many days from school, she was successful in all her CXCs and A levels at Campion College, and went on to pursue her first degree and a Master’s in Development and Social Policy at UWI. She is now a teaching assistant in the Department of Sociology, Psychology and Social Work, where she is currently pursuing her doctorate and was recently awarded by FirstCaribbean International Bank for her selfless work under their Unsung Heroes Programme.

“I think growing up, my worry was that I would remain in relatively good health so that I could achieve my goal. I’ve heard so much about people dying at such an early age, that I had to say to myself, well I hope that I am not in that category,” she said.

She credits her success to the dedication and commitment of her parents, and the constant support and understanding of her classmates who shared their notes with her when she had to miss her classes due to excruciating pain brought on by the disease. But Daley has realised all too well that many sickle cell patients are not so fortunate and often exist in isolation. Since starting the group, she has also met other sicklers who have contemplated suicide.

SCSCJ consists of about 50 members who meet every second Saturday in a classroom at the Merl Grove High School in St Andrew. There they provide emotional support to each other and work on projects to help other sicklers like themselves. Among other things, the group was successful in getting the Government to implement a national blood programme for neo-natal screening of babies at several local hospitals in 1996.

The group’s booklets Get The Facts on Sickle Cell Disease and The Teacher’s Guide to Sickle Cell Disease are currently being used by patients, relatives, health workers and teachers, and the club’s annual Sickle Cell Awareness Week has increased awareness about the disease. Realising that some sickle cell patients had to drop out of school, the group also places a lot of emphasis on the personal development of sicklers through skills training and remedial classes.

“We have persons who have shown an interest in photography and baking and so on, so we would assist them to get trained in that area. And there are some patients who are almost illiterate, so we assist them to go back to JAMAL (now Jamaican Foundation for Lifelong Learning),” explained Daley.

The group has developed a number of fund-raising initiatives over the years to get money to help, such as having concerts, tin drives and benefits. But this is most times insufficient to carry out some of the projects the group wants to undertake. Still, they continue to try to assist patients in any way they can; whether by providing sweaters for them in the cold, teaching them how to deal with the pain or helping to finance their medications.

It is Daley’s hope that one day the Ministry of Health will list the illness as one of those to be covered by the National Health Fund so that patients can get medication at discounted prices.