Nearly 100,000 Americans live with sickle cell disease, according to the Centers for Disease Control and Prevention, and every September many of those who suffer from the ailment as well as their families and supporters, participate in National Sickle Cell Awareness Month.
Symptoms include widespread pain, fatigue, organ failure and a shortened life span. A person with sickle cell will usually live to the age of 50. The diease affects one in 500 African Americans, but can also affect Hispanics.
“You get slow throbs and it builds and then feels like someone is punching you, then stabbing you, then a building is coming down on you,” said Eric Williams, a 25-year-old living with the genetic disease.
As a child, Williams said he had more access to pediatricians who specialized in the disease. As an adult, it’s considerably harder for him to find specialists in Los Angeles County, where he lives, that treat adults.
Dr. Susan Claster is one hematologist in Orange County who does treat adults, but has trouble handling a huge flux of patients by herself. “I can’t see everybody, and we need to find others who are interested in seeing these patients,” Claster said. “That really frustrates me.”
California and eight other states recently received grant funding to expand treatment for sickle cell patients.
Williams, set to attend nursing school, said he won’t let the disease slow him down, and hopes to inspire others. “I would like to inspire them by having them see you can go to college and get a job and be part of mainstream society – you just have to figure out your way to do it,” Williams said.
To learn more about Sickle Cell Disease, go to: http://sicklecelldisease.org/index.cfm?page=news&id=94
original article by Angie Crouch and Heather Navarro via nbclosangeles.com; additions by Lori Lakin Hutcherson
Through their partnership with the Embrace Kids Foundation, the McCourty’s Tackle Sickle Cell initiative is a platform to help them increase awareness, educate and raise funds. Signature events include a 5k walk, casino nights and blood drives. “If we can just keep raising awareness and getting more people involved they can realize this is a serious disease and the more people that are helped and the more that know about it and donate to it, the better it can be.”