“I don’t know what it’s like to be healthy. I only know what it’s like to live.” Those words, from Don Vallien, sum up the 39 years of his life. A life of pain and fatigue caused by a life-threatening illness. Sickle Cell Disease/Anemia, is a hereditary blood disorder that can decrease the cells’ flexibility and result in a risk of various life-threatening complications. The life expectancy for men, 42, and for women, 48 years.
Vallien deals with daily pain but he said he has found a way to cope and a way to raise awareness to the illness. Septermber is Sickle Cell Awareness Month. Piggy-backing on the popular ALS Ice Bucket Challenge, Vallien created the Sickle Cell Bottled Water Challenge.
“Whomever gets called out, they have to drink a full bottle of ice cold water all at once, without stopping,” he explained.
The water does not have to be ice-cold, as this may prove to be difficult and sometimes damaging on the body, but it must be a full bottle of water. He said he isn’t setting a specific amount that someone is required to donate. Any and every amount counts. He added that those who participate can forget money, and donate blood, as tranfusions are a necessary part of survival for “sicklers.”
“I have a blood transfusion four times a year,” Vallien said. The full-time barber and owner of City of Stylez Barber/Beauty Salon estimated having over 100 transfusions in his life-time.
Awareness and research is critical. Sickle Cell, like ALS, is an often “over-looked” disease. In reality, one in every 12 African-Americans carry the sickle cell trait or have the disease. However, minorities are not the only ones at risk. In the U.S., between 70,000 – 100,000 individuals have sickle cell disease but 3 million have sickle cell trait.
“Just because you don’t see the face of sickle cell anemia, doesn’t mean it’s not all around us,” Vallien said before suggesting that people be tested for the sickle-cell trait to diminish the chance of passing it to a child. According to the National Sicke Cell Disease Association of America,
•If one parent has Sickle Cell Anemia and the other is Normal, all of the children will have sickle cell trait.
•If one parent has Sickle Cell Anemia and the other has Sickle Cell Trait, there is a 50% chance (or 1 out of 2) of having a baby with either sickle cell disease or sickle cell trait with each pregnancy.
•When both parents have Sickle Cell Trait, they have a 25% chance (1 of 4) of having a baby with sickle cell disease with each pregnancy.
A simple blood test can determine if someone possess the trait.
For Vallien, he simply wants to let others know they are not alone, and they have a chance to help. So far, he estimated he helped raise close to $500 dollars for research in the first three days of the month. He plans to drink one bottle a day for the month of September, although someone who is challenged only has to drink one bottle altogether. In the end, he hopes to challenge at least 150 people to guzzle an ice-cold bottle of water.