Bleeding Disorders Association of South Carolina community member, Hunter Day, shares his life’s experiences of living with severe Hemophilia. Hunter is raising awareness and the importance of having access to care during BDASC’s State Advocacy days. An important rare and chronic disease community priority is advocating for the passing of South Carolina’s House Bill H.3618, allowing for all copays to count towards patients out of pocket maximums.
When our daughter Daphne was diagnosed with Von Willebrand disease almost 8 years ago, we never expected to experience the challenges that we have since faced. As with most children, each year brought new challenges and new experiences, but with a chronic illness, these challenges seemed insurmountable.
I have Hypermobile Ehlers Danlos Syndrome and many comorbidities associated with hEDS. I was diagnosed in 2018 at the age of 19. I had two reconstructive joint surgeries by this point and still had multiple symptoms that could not be diagnosed as one thing.
I was diagnosed with postural orthostatic tachycardia syndrome (or POTS) in April of 2019, after having symptoms of it for approximately 9 years. I sought help from different medical professionals many times over those 9 years, looking for explanations to why I felt so dizzy, weak, nauseous, and foggy at random.
