Living with sickle cell disease

Claudine Ramdon has been living with sickle cell disease since childhood – one of 46 people in the Cayman Islands who suffer from the hereditary illness.

Sickle cell disease is a severe hereditary form of anemia where a mutated form of hemoglobin distorts the red blood cells into a crescent shape producing low oxygen levels. Cayman and other countries worldwide observed World Sickle Cell Day this month, on June 19.

Ms. Ramdon, who was diagnosed as a child in Jamaica, said, “I found out from the time I was pretty young, and then I had to get regular doses of penicillin. I know that is done here when babies are diagnosed but it’s just for a while when you are young so that when you are exposed to things like pneumonia you can be protected.”
Infant screenings for sickle cell disease have been available in Cayman since the early 1970’s. The American Academy of Pediatrics recommends penicillin treatments for children with sickle cell disease under the age of five to prevent harmful infections.

According to Joy Merren, genetics coordinator of the Public Health Department, prospective parents who are both sickle cell carriers have a 25 percent chance of producing a child with sickle cell disease. A blood test can be done to determine if a person is a carrier.

“It is important to test for sickle cell trait, or carriers, as this information can help parents make informed reproductive choices,” said Mrs. Merren.

Lifestyle choices

Mrs. Ramdon, who is in her early 40s, said living with the disease is manageable, for the most part.

“Basically, we lead normal lives if we manage to take care of ourselves, take our vitamins, keep hydrated and stay away from situations that will cause us to have a painful crisis,” she said. When the irregular blood cells clump together, they stop the blood flow causing a “dull nagging awful pain,” she said.

There are a number of lifestyle choices people can make to prevent a pain outbreak, and treatments can help relieve symptoms, but there is currently no widely available cure for the disease.

“People with sickle cell disease should drink 8 to 10 glasses of water every day and eat healthy food. Try not to get too hot, too cold, or too tired…,” according to the Centers for Disease Control and Prevention’s website.

Mrs. Ramdon said she has been unable to get life insurance, even though she does not have a disease that makes her terminally ill.

“‘Sicklers’ on the whole have problems with obtaining life insurance; it’s just not offered to us. Some sicklers even have problems getting health insurance. This is a big concern as sometimes there are life threatening complications,” said Mrs. Ramdon. A sickle cell support group meets four times a year at the waiting room of the Public Health Department.

Mrs. Ramdon said support groups are helpful as members of these groups are able to “learn from each other.”

“Everyday is a learning curve, some people have different methods of treating pain at home,” she said.

To find out when the meetings will take place or any other information about the disease, contact Joy Merren at the Public Health Department on 244-2630.