Did you know that millions of people world-wide suffer from sickle cell disease–an incurable inherited blood disorder that affects red blood cells? Did you know that millions more carry the sickle cell trait (an inherited condition in which both haemoglobin A and S are produced in the red blood cells) but that many are unaware of it? Did you know that when both parents have the trait there is a 25 per cent chance that they will have a baby with sickle cell disease with each pregnancy? Or that if one parent has sickle cell anaemia and the other has the sickle cell trait, there is a 50 per cent chance of having a baby with either sickle cell disease or the sickle cell trait?
Did you also know that if one parent has sickle cell disease and the other doesn't, all of the children will have sickle cell traits?
These alarming statistics underscore the need for more education and public awareness about this serious health issue. What you don't know can kill you!
Coping
Mark, (not real name) was born with sickle cell disease. His three siblings were not. Coping with the illness, especially during childhood, has been no easy task. Noting that he would often become bedridden and crippled with severe joint pains, he says, "There were things as a child that I couldn't do. I couldn't be active for long periods because I got shortness of breath." Although the joint pains have lessened, Mark, 42, now struggles with swollen ankles and skin ulcers because of poor circulation. His advice to others? Get tested for the sickle cell trait!
"People are ignorant and think that it can't run in their family. People hooking up with people who have the trait and having kids, and these kids coming out with the disease." Noting that the disease has deterred him from starting a family of his own, he says, "I know what I went through and I don't want to put any child through that."
Get tested
Local medical doctor, Imran Aziz, says sickle cell disease usually does not appear in an individual until three to six months of age.
Due to improved treatment and care, he says affected persons are now living into their 40's, or 50's, or longer. "Long ago it was difficult to find patients living past 25, but now it's a common trend to see people living longer with the disease." Aziz says while the Ministry of Health is doing its part to educate the public about the disease, individuals should be more proactive in educating themselves and getting tested for the trait. "It's extremely important to know," he stresses.
Daley Hope
Meanwhile, Tyrish Ali, who believes that the majority of the population remains "ignorant" about the disease, has taken up the mantle of spreading the word. Twenty-two-year-old Ali hopes to soon establish Daley Hope–a non-profit organisation dedicated to her late mother, Dale Minguel, who died last year of complications related to sickle cell disease. She was 47. "Recently I found out that two young people died of the disease and it brought back painful memories of my own mother's death," she says. "I encourage people to get tested for sickle cell trait and I encourage everyone with sickle cell anaemia to seek and continue getting treatment."
More info:
People with sickle cell disease have red blood cells that contain mostly haemoglobin S� an abnormal type of haemoglobin. (Normal red blood cells contain haemoglobin A. Haemoglobin S and haemoglobin C are abnormal types of haemoglobin.) Sometimes these red blood cells become sickle-shaped (crescent shaped) and have difficulty passing through small blood vessels. When sickle-shaped cells block small blood vessels, less blood reaches that part of the body, resulting in damaged tissue. Sickle cells are destroyed rapidly in the body, causing anaemia, jaundice, the formation of gallstones, damage to the spleen, kidneys and liver.
The most common types of sickle cell disease are: Sickle Cell Anaemia (SS), Sickle-Haemoglobin C Disease (SC), Sickle Beta-Plus Thalassemia and Sickle Beta-Zero Thalassemia. There's currently no universal cure for sickle cell disease, which is most common among people whose ancestors come from Africa; Mediterranean countries ; the Arabian Peninsula; India; Spanish-speaking regions in South America, Central America, and parts of the Caribbean. Persons born with only one sickle cell gene carry sickle cell trait. People with the trait are generally healthy.