My name is Jeron Craig Hill (Ron) and I am 22 years old. I live in North Carolina and have adhd, mild autism and severe hemophilia B. My personal experience within the hemophilia community is as an advocate and participant in the Generation IX project retreat, which is an experiential learning program sponsored by the Coalition for Hemophilia B. Also, I have my own hemophilia walk team called “Team Hill.” My family and I participate in a bleeding disorder 5k walk and family festival to raise awareness for people with preexisting medical conditions. As you can tell, the whole hemophilia community is my extended second family. The community means so much to me because they comforted me when I lost my older brother who passed away in May of 2016.
I have a lot of support from the hemophilia B family when it comes to my personal well being and safety. When I was 21, I lost my insurance coverage.There was no way that I could afford the factor I needed. I had applied for the Generation IX retreat in Traverse City, Michigan, and when I arrived to the program I had a real bad groin bleed and only carried one dose of factor. The hemophilia community made sure I got everything that I needed.
Soon afterward, the community helped me enroll in a free trial. A great team of people helped me through the process of getting factor, and they made me feel very loved. Since then I have bought my own insurance by myself and feel more safe and secure in my care.
I am proud to say that I am a part of this wonderful community of individuals, because the community has done marvelous things for me. I wouldn't have factor if it wasn't for the community support that I have all around me. One piece of advice that I give is that you have to advocate for yourself, no one else is going to do it for you. You know you better than anyone else. But with hemophilia, you also have a community of individuals who will have your back and will always be there when you least expect it.