5k Turkey Trot Run / Walk celebrates individuals affected by hemophilia and rare bleeding disorders
By Sue Martin – Executive Director, Hemophilia of South Carolina
There was a time when running or even walking a 5k was not really possible for those diagnosed with severe hemophilia. The length of the run and the pounding of their shoes on the pavement could have caused internal bleeding into the ankles and knee joints. Treatment at that time was nothing like what is available now. Today, individuals affected who are lucky enough to have access to their clotting medications are reaching potentials never dreamed of before. Finishing at the top in high school sports, becoming national wakeboard champions, climbing Mount Everest, attending college, or playing soccer and basketball like all the other kids, all show we have truly come a long way. It wasn’t an easy road. The bleeding disorders community has been working for many decades to achieve life expectancies now normal to those without hemophilia. Today, we advocate to assure we don’t move backwards in time, when access to treatment availability was more difficult and healthcare was a continuous struggle. We all know now that with access to quality care and treatment, individuals with bleeding disorders can thrive and dream big!
Hemophilia is a blood disorder in which those who are affected are missing a certain protein in their blood which is necessary to help the blood form a clot upon injury to a blood vessel. There is no cure, and treatment is very complex and extremely expensive, up to $250,000 annually for some individuals.
Our Chapter, Hemophilia of South Carolina (HSC), serves the entire state of South Carolina. Today, we have registered members in 38 of the 46 counties. With our home office in Greenville, travel throughout the state becomes necessary to serve our community. Hemophilia of South Carolina strives to promote awareness of bleeding disorders to the general public. Every year, HSC provides support, education, advocacy awareness and outreach services to hundreds of citizens of South Carolina and their families who are affected by a bleeding disorders. HSC is one of 55 chapters throughout the nation which are affiliated with the National Hemophilia Foundation (NHF) providing support, group opportunities, teen retreats, family camps, an annual state educational symposium, social networking events, college scholarships, emergency and compassionate financial assistance and more.
We have also had some big impacts in the lives of those we now serve. Bradley, a young man from Kenya who came to America barely able to walk due to severe joint damage from a lack of access to proper treatment, just returned from Washington, advocating with our member organization, Hemophilia Federation of America (HFA) during a summit which brought young adult advocates throughout the nation for training to address access to care and treatment. He was accompanied by our junior board member advocate, Temeelah. They were grateful to spend time visiting with Congressman Joe Wilson (SC-02), sharing their experiences. Having access to his clotting medication he takes intravenously every other day to prevent internal bleeding, Bradley stays active like others his age, currently attending college, and having aspirations to give back to his community. Learning about his disorder from his peers and educators which he contributes in part to his time spent with HSC, today his dreams are plenty as he looks forward to a bright future ahead. Another young adult member of our organization is affected by mild autism along with von Willebrands Disease, a condition we also support and is thought to affect 1% of the population. It was through his family’s involvement in our Chapter and his volunteer services with our teen youth activities that he has been able to overcome some of the challenges of living with autism. He has built lasting relationships with his bleeding disorders friends and community of HSC.
Hemophilia is among the rare diseases. Funding becomes difficult for non-profits that serve small populations like hemophilia which affects less than 20,000 people nationwide. Grants, donations, and fundraisers are essential to our existence and our ability to assist those individuals affected. One in every 5,000 male births are diagnosed with hemophilia, which is generally inherited. However, one-third of all new cases of the disorder are new mutations, with no known family history. Today with initiatives such as the national My Life, Our Future project currently being offered at the Hemophilia Treatment Center in Columbia at Palmetto Health Richland, we have identified over 4000 different mutations in the genes that produce our blood’s clotting factors. This makes treatment for those with hemophilia very complex and individualized. A one size fits all approach is just not possible. Therefore, education and network support for families is what we do best at HSC. Bringing in the experts in the fields of bleeding disorder education and providing our members the opportunity to meet others is invaluable for those affected. For many of those affected and especially for families where hemophilia is a complete surprise and very overwhelming, receiving an opportunity to connect with others who understand what they are feeling and being there to provide a hug of support makes all the difference.
On Saturday, November 4, at 10:00am, I will be participating in our annual Turkey Trot 5k Walk / Run fundraiser in Columbia at Saluda Shoals Park. I will have the privilege to hear, “On your mark, get set, go!” –and so we will. Our children, their families and friends will run, jog, and even ride bikes. Folks will stroll, roll, jog and walk all to raise awareness and celebrate how far we have come through the years. We still have a long way to go to find a cure for hemophilia and all rare bleeding disorders, but we will continue to advocate, until a cure is found.
So won’t you join me and let’s together take a morning walk and show support for our friends and families in South Carolina who live daily with the diagnosis of having a bleeding disorder. You can learn more about us on our website at www.hemophiliasc.org and register to join us in Columbia for the Turkey Trot or make a donation of support. For additional information call 864-350-9941. I hope we will have the privilege to have you join us!