updated: 2021, April
. . . FROM 66 YEARS OF LIVING RARE, 43 YEARS OF BEING MISDIAGNOSED – RE-DIAGNOSED, AND AS MANY YEARS OR MORE BEING DENIED ACCESS TO EXPERIENCED DIAGNOSTICS
AND PROPER MEDICAL INTERVENTIONS. THIS IS BILL. THIS IS DAWNE WHO HAS LIVED THE OVERWHELMING NUMBER OD THESE EXPERIENCES TOO.
[ 1 ] To be clear, NO MOM OR DAD did anything to cause our RARE GENETIC medical condition. We are born 1 in 100,000 – in some cases even more dramatically rare. MOTHER NATURE DID THIS.
[ 2 ] Insurance companies must be held to account for withholding full vein and lymphatic vessel mapping. These are critical and are best when done as early as it’s medically safe for a child. No one should be allowed to go into their “formative” years, much less adulthood guessing as to how affected they are AND if radiological or surgical intervention is plausible.
[ 3 ] Organizations and doctors that “PROFIT” from selling Interventions must be required to expressly inform their patients and caregivers that expensive Laser treatments are primarily Capillary focused, as applicable. When these are not Vein or Lymphatic Vessel fixes, they are not cures for vascular congestion and associated venous stasis ulcers which are so often the largest threat to our lives. And when applicable, lightening up the VISUAL LOOK of a Capillary Malformation, a Port Wine Stain, is not our panacea, our magic cure. It’s largely a cosmetic procedure.
[ 4 ] Yes, the psychological component of our care and treatment, as children and adults, is indisputable; that said, our physical-biological health is dependent on diligent, timely support and careful attention to our TOTAL SYNDROME – be these medical OR psychological. Just as critical is NOT UNDER-PLAYING the very deep need for comprehensive and experienced examinations, diagnostics, and prescriptions, INCLUDING veins, lymphatic vessels, wounds, pain management, mental health, vocational health, and long term prognosis.
 Moms and Dads please seek out experienced multi-disciplinary Vascular Anomaly institutions and doctor teams who have a history of treating kids with Congenital Vascular Anomalies. THESE LAST 15 YEARS HAS PRODUCED AN EXPLOSION OF SUCH RESOURCES. The WORLD has skilled and knowledgeable support groups that are good resources for seeking these out – these are good starting points – so many staffed by dedicated volunteers from our Born Rare Community across the world.
[ 5 ] Groups flying the “support” flag must become responsive to those of us who are born rare. Our life experiences with our care and treatment must not become extensions of a historical medical enterprise that muzzles our reality, our truth. We must not forget that it is us who are born rare that bear the major brunt of our syndromes. It is us who need to be heard, respected and given deference. PLEASE RESPECT OUR VOICE, OUR REALITY.
[ 6 ] BORN RARE, LIVING LARGE is an everyday occurrence in our community of unique and gifted people. We are resilient, intelligent, strong, and compassionate people. We deeply care about our born rare community, our family and friends. WE ARE PRODUCTIVE CITIZENS, EMPLOYEES, PARTNERS.