From the very beginning my life has been hard. Born in 1954 not much was known about the immune system, brain dysfunctions, learning disabilities, and DNA had only just been confirmed to have a role in heredity in 1952. Yet I was born with all these issues and more. Lucky me!
In my search for answers, I was able to receive my medical records dating back to when I was 9 years old and first entered the Kaiser Permanente Medical system. All previous records from Lake Merritt Hospital in Oakland, CA, where I was born, was lost in the Loma-Prieta Earthquake in 1989.
According to the intake notes from my Kaiser medical records, my mother told the doctor that I did not talk until I was three and a half years old, and now they can not shut me up!. I learned the word "loquacious" at a very tender age. Yes, apparently at age 60 I still talk a lot. People still say "Boy that woman can talk!" And yes, you will get that very point as you read this blog ... LOL
I am starting at the beginning because this is about a journey, not just a medical condition. How boring would that be! Throughout the years, as people have learned and heard my story, they often say I should write a book about it all. I have never felt, however, that there was a full arc to my story. I often felt that there probably would never be one and I would die with so many questions and mysteries about my life, and my daughter's life, undiscovered. No end or climax to our story; no payday, so to speak. Until now.
In my search for answers, I was able to receive my medical records dating back to when I was 9 years old and first entered the Kaiser Permanente Medical system. All previous records from Lake Merritt Hospital in Oakland, CA, where I was born, was lost in the Loma-Prieta Earthquake in 1989.
According to the intake notes from my Kaiser medical records, my mother told the doctor that I did not talk until I was three and a half years old, and now they can not shut me up!. I learned the word "loquacious" at a very tender age. Yes, apparently at age 60 I still talk a lot. People still say "Boy that woman can talk!" And yes, you will get that very point as you read this blog ... LOL
I am starting at the beginning because this is about a journey, not just a medical condition. How boring would that be! Throughout the years, as people have learned and heard my story, they often say I should write a book about it all. I have never felt, however, that there was a full arc to my story. I often felt that there probably would never be one and I would die with so many questions and mysteries about my life, and my daughter's life, undiscovered. No end or climax to our story; no payday, so to speak. Until now.
About a month ago, I discovered a peer reviewed medical article publish in 2012 that tied together all the bits and pieces of our condition and family history. Though I had come to the same conclusions nearly a decade ago, I could not prove it. Now this article, and the genetic research stemming from these discoveries, has changed everything. It may not provide the answers in my life time, but it is the first pay-dirt of this magnitude to be found on the multifaceted, and multi-systemic nature of Ehlers-Danlos Syndrome Hypermobility Type (EDS-HT). Here is the link to this life changing article:
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