In a previous post I described my motivations in 2005 and 2011. This current day post provides additional background on my overall journey with KT and associated Congenital Vascular Anomalies, with focus on my diagnosis in 1997 and a all-in dedication since to KT education, awareness and support. It’s a semi-retired perspective.
From our archives – I was finally diagnosed with Klippel-Trenaunay Syndrome in 1997, at 43 years old.
It took until 2003 for the US Social Security Administration to finally accept my doctors’ prescriptions and prognosis.
By 2004 I had found and attended my first two Medical Support Conferences in the US.
By 2005 I was writing about my personal and medical experiences; as well as, the medical data, studies, and research I found while doing extensive homework on bona-fide professional work products like those from the US NIH (National Institute of Health).
By 2006 I was a fulltime volunteer as an online support person in several groups across the world, the US having the more dominant presence, largely because of the Facebook explosion. This lead to me accepting a Board of Director position with a legacy Medical Support Organization for several years. What else to do, but pass on what I had learned, learned by necessity. Those 6 years fighting through the US Social Security gauntlet had forced me to be better informed than the average US bureaucrat doctor.
At the end of 2020, I semi-retired from being a fulltime volunteer moderator and mentor in online Support Groups for KT and associated Congenital Vascular Malformations. Having spent 15 years in support of KT and associated Congenital Vascular Anomalies, I semi-retired. I had committed to stay fully active until then.
Now, I’m back to my own creative instincts and writing again. The social media based support groups are well established and will flourish, provided Facebook doesn’t collapse. I have returned to being the daily homework person – researching professional information and publish studies in order to create the 3rd and final version of SEEN, YET NOT HEARD.
The final version, my end days will be in the form of conversations with fellow warriors. I look forward to it.