I preface the following perspective with a sincere plea to hear this as a very personal story. It serves as my basis of speaking up – it is “my reality” – a popular expression I use to address the hidden, the unseen, the not so obvious. In no way does this lessen a fellow travelers journey, their reality. They well may have an equally compelling perspective. I speak to prompt serious conversation and I hope systemic change in how the med-science community characterizes us, our symptoms, our syndromes.Bill
I don’t need much more motivation TO WRITE, TO LEARN, TO ADVOCATE. The 1st parental experiences of my father and mother with me, a born rare baby were horrendous. The Army doctors responded to my medically trained, active duty father, don’t worry “it’s just a birthmark”. A reprise I have heard repeated my entire life, as late as 50 years old. My mother was handed me by a floor nurse who said nothing about my obvious vascular anomaly. An when asked told I had a strawberry birthmark.
At 43, a biological time bomb exploded in me in a big way. There were signs along the way that did not trigger curiosity by my doctors, much less needed support by my medical insurance companies. My 1st real complications showed up in high school and were in full view by college – by 43 I was ordered to stop working. Permanently!
Seen yet Not Heard, my journal’s genesis, it’s name, is a homage to the above stark reality, a reality that I thought only a few shared. Turns out science says 1 in 100,000 births. This is in the main a MULTISYSTEM, COMPLEX BIOLOGICAL syndrome. For many of us there are difficult days, but manageable days. Yet, we live productive, meaningful, and happy lives.
I do admittedly have a pet peeve which deserves to be clearly stated. It’s those words my father heard in 1954 that survive to this day. I challenge the medical profession to lose them like all dated and inaccurate language and labels tossed aside. The false impression that our anomalies are skin deep sets us up for poor long term outcomes.I invite conversation on this perspective
The image on the left is what I looked like when the maternity ward nurse handed me to my mother without explanation. [Incidentally, my mother freaked out thinking I was bleeding under the skin.]
The heavily Varicosed Veins, in the picture on the right, started to show up when I was as young as 9 year old. The coloring was lighter, but covered the same areas. Beyond what I already reported above, a few doctors explained Mother Nature’s capillary-based artwork with, “it’s a Flame Nevus”. A few more said. “it’s a Hemangioma” – another totally bogus diagnosis. One more picture below for those who struggle with Open Wounds, or what I have learned to call Venous Stasis Ulcers. These were my second sign of much deeper biological-medical issues. These showed up at age 17 and never left me. It seemed like an every 8 week cycle, followed by months and months of healing time while a remained bedridden. The longest such healing period being 4 years. I did finally turn that into a Bachelor’s degree and a desk job. The restaurant management physicality’s were simply too much for my vascular system.
I spent over 40 years seeing doctors who did not know root causes. Interestingly, it took the Chief Vascular Surgeon at the Scripps La Jolla Medical Clinic, San Diego, California, USA, in 1997 to give me a name, a diagnosis that has since carried me to my first medical intervention at 63 – the latter done in 2018 by an awesome multi-disciplinary team at the Gonda Vascular Center, Mayo Clinic, Rochester, Minnesota, USA. These Venous Stasis Ulcers have decreased to virtually none. Factually, only one minor breakdown which I caught in its very early stage and resolved using a combination of Brown Sugar topically, covered with DuoDerm [CGF] bandaging.