When I was diagnosed with Diamond Blackfan Anemia back in 1970, I was lucky enough to have a doctor that knew about DBA and knew what he was dealing with. I was put on a course of treatment and throughout the years, the doctors did what they could. But having DBA was a very isolating experience for my mom and my dad and myself. I was the only one around who had DBA. There were no support groups and certainly no internet. So as I grew up we just had trust in the doctors and moved forward. It was oftentimes very lonely.
In my late thirties, I was beginning to struggle a bit with the DBA. Some of this was my fault because I had developed chelation struggles. Yet, some of this struggle was having doctors that simply didn’t know what to do with a person like me. What do you do with a 38 year old person who has been receiving transfusions for 33 years, was completely iron saturated and never felt good? None of the doctors I dealt with had good answers. I felt defeated.
It was then I decided to become pro-active with my health and find some answers for myself. I searched the internet. I found the doctors in Long Island New York. I was able to meet with them and find some answers. I began an aggressive attack on iron and began to learn many things about DBA. First of all, I learned about the invaluable resource of Dawn Baumgardner and the DBA Foundation. The Foundation provided a wealth of information, resources, and support. I also learned about Camp Sunshine and attended my first session.
Camp Sunshine was an amazing experience for me. For the first time I could sit down face to face with another adult DBA patient and compare notes on growing up with DBA and have someone who truly understood my story. At Camp Sunshine I also met parents whose children have DBA. I tried my best to answer their questions and be a support to them. As I met parents and their DBA children I started to feel a new responsibility. As an older DBA patient, I felt I owe it to them to live my life to the fullest and always be a good example of what being older with DBA can be. Most importantly, at Camp Sunshine, I met researchers.
Finding out that there is research being conducted on DBA was startling to me. I had been convinced throughout my life that research was not conducted on DBA simply because it is so rare. Little did I know that there are many researchers around the world very interested in DBA and that they are doing all they can to find answers. So you can understand how powerful it is for me to be here and to see the dedication there is to DBA and to research.
Knowing about DBA research is remarkable to me. It brings about a hope that previously did not exist. It is not easy to live with Diamond Blackfan Anemia. Life is challenging every day and it becomes very tiring having to continuously face health issues that just do not go away. However, now I have a hope that something can change. A new treatment might come along. Or perhaps the ultimate goal of a cure might be found. I now have a reason to keep myself as healthy as possible, because I want to be ready. I will be ready when the announcement is made and they are looking for DBA people to try a new treatment or procedure. Research has already given us genetic answers with gene identification. It has given DBA patients fertility choices that were not possible before. Research can give more vital information for bone marrow transplant decisions.
Research keeps me wanting to fight even when I am tired of the doctor appointments, the medications, and the needles. When I’m overwhelmed with tiredness, aches, pains, and questions of why me? I remember there are people out there trying to help.
I have lived most of my life with DBA isolated and alone. Today I know that I am not alone. I have a dedicated DBA family to turn to and rely on. I have a DBA Foundation earning money and supporting research. I have doctors to turn to with vast DBA information. I have a DBA family on Facebook who I can get messages from daily. I can offer encouragement and support and get that same support when I need it. Most of all I have the hope of research. There is no doubt that children with DBA today have much more information to live healthier lives. My parents were told I would live to maybe twenty years old. I don’t believe the average DBA patient would ever be told something like that today. This young generation of patients can grow up knowing research is occurring and can benefit from all the information that has already been and continues to be gained. I am forty five years old. I have a future too. I have made it well beyond that twenty year expectancy and plan to keep on going for a long time. I do so with the hope of something new in my future. So get to work. Keep it going. Make that breakthrough. When you do, I will be ready. I thank you whatever your role with DBA may be. I thank you for your work, your dedication, and for the hope that you give to me and many other DBA families to keep ourselves healthy and to having a better future.