After spending what seem a lifetime educating people about bleeding disorders and hemophilia specifically, it was disheartening to waken on Monday March 16, 2014 to find my social network full of statements denouncing ABC Television's "Secrets and Lies" (S1, E4) for one of the characters referring to hemophilia as "a nasty byproduct of incest". This is a myth born out of hemophilia being in the Royal family's of Europe and Russia. Before genetics and mutations were even thought of or well understood medical practitioners attempted to explain the occurrence of hemophilia in a family as one of those disorders that might happens within a small pools of genetic material, intra-family marriages. In other words incest was a possible culprit for the occurrence of hemophilia in a family, this is the myth that will not die. This false explanation so long ago does not stand up to the medical and scientific knowledge and understandings of genetics and mutations of genes that we have garnered from years of research and study in hemophilia.
When I say that I have spent a lifetime educating people about hemophilia, I am including medical professionals as a large component of that group. As a child growing up in a military family we moved every four years of my life until age fifteen. So there were always new doctors, nurses and of course because of their military service they were always coming and going where and when the service sent them, so I never really and any one doctor for more than four years if we were lucky. Since hemophilia is a small subcategory of a specialist in Hematology/Oncology and the disorder rare only 1 in 10,000 births, most hematologist may never have treated a person with hemophilia before meeting their first patient with the disorder. So mine and my parents knowledge was important to my care. Since the age of twenty four I have been under the care of one of the federally funded Hemophilia Treatment Center. Like most of these centers mine is connected to a medical school, so we get to see medical students and newly minted young doctors from time to time and I take every opportunity to pass on as much information as I can in the time I have with them. I have even given several talks to Intro- to- BioTech classes at my alma mater and presentations to insurance executives on hemophilia. So it is hard to understand why this particular myth continues to persist.
The reason I have an understanding of this myth is that it is one that my own Grandmother held until she was in her nineties. Late in her life I attempted to connect myself to the two other known hemophiliacs in my family tree, her brothers. Both of whom die from internal bleeding early in their lives, one at age four and another at age sixteen. During one of our long conversations about them, she expressed regret she had not been a spinster school teacher there by stopping the passing on of these genes. Wanting to understand the source of this regret because it would have meant she would never have had her five children and their children and their children was and is unfathomable to me. All to prevent me from having hemophilia was a most disturbing thought, because for the most part I have truly enjoyed my life with all of the challenges I have faced. As I explored this statement by her in more detail the real source of this regret, guilt and shame was this myth that she had learned as a small child, that her parents were told by a doctor that the most probable cause for her brothers having hemophilia was incest in the family tree. We have to remember that this was a time before blood typing and human to human blood transfusions were commonplace so this type of leap in logic might be understandable in that historical context but not today. I spent some time talking with her about my understanding of hemophilia today and almost all of the information was beyond her understanding of hemophilia. She was amazed to hear about spontaneous mutation and that women can have hemophilia. Another myth that doctor religiously repeat even today is that women cannot have hemophilia, to a women with hemophilia. It might be genetically hard but it is not impossible or improbable.
My Grandmother passed away five years ago at the age of 98, since then I have learned through DNA testing that my hemophilia is a single point mutation. This is exactly what nature does though the natural selection process, it changes a gene to see what happens in the environment, either the organism will success or fail. Today with a little bit of high cost medication people with hemophilia can succeed in their environment just fine. Tomorrow the future looks even better. In my last conversation with her I told her that I firmly believe that there will be a cure for hemophilia in my lifetime, I still believe that statement to be true.
Finally, I have spent the last couple of days thinking about what I would like to see ABC Television do about this false and offensive statement by a character in the show "Secrets and Lies". As an educator on the subject I thought that this might be our best chance to kill this myth once and for all. So I would hope that ABC Television offers the national organizations representing people with hemophilia the opportunity to create a PSA (Public Service Announcement) to be aired on the anniversary of this episode in the middle of National Hemophilia Awareness Month to dispel this myth once and for all. This would be the best possible outcome.
