Seen, yet Not Heard Journal
4th edition JOURNAL
switch to OUTREACH COVER PAGE
A GOLD STANDARD AGGREGATOR FOR THE
BORN RARE COMMUNITY OF CONGENITAL VASCULAR ANOMALIES
Our mission is to get you to the best resources – info & support entities
THANK YOU ALL for
your support and encouragement these last almost 20 years, 2002 did not anticipate today. Welcome to the ‘soft reopening of our Journal – it’s 4th edition.
We are still working through our legacy content and cleaning it, organizing it, and fixing broken weblinks to outside resources. Please bear with us as we continue to sort, clean, toss, and archive.
We wanted to get back on-line as quick as possible to make our legacy content available to those without direct physician support. We have a new public awareness component and personal dedications coming soon.
Peace and love, best in health and life!
10 Years Friend,
Happy Anniversary Ari !
We first met you via the internet.
You are the first person who motivated me
to write more, to keep blogging. And then you reached
out as a pen pal sharing your most personal thoughts.
And you became a dear friend who always
finds the time to check in on my KT struggles,
even when yours are monumental. You meet
every criteria I call hero. You lead and have done so
from a very early age. Ari, you were first to speak
in our community of mental health being every
bit as vital as biological health. We wish you every
benefit and better days as you teach us all about
compassion, resilience, and wit.
SUPPORTING THE BORN RARE COMMUNITY
BORN RARE, MARRIED BORN RARE.
DAWNE AND BILL live, breathe, and fight Mother Nature’s proclivities each day.
IF YOU JUST BIRTHED YOUR PRECIOUS BABY OR ARE IN THE EARLY FORMATIVE YEARS OF THEIR CHILDHOOD, EACH DAY BRINGS AN EQUAL SHARE OF JOY AND CURIOSITY ABOUT THEIR FUTURE LIFE, BORN WITH A VASCULAR ANOMALY COMPLICATES LIFE.
IF YOU ARE A WIFE, HUSBAND, PARTNER, SISTER, BROTHER, COUSIN, FRIEND, CAREGIVER, OR COMPASSIONATE ADVOCATE, THEN YOU ARE BOUND TO SHARE COMMON EXPERIENCES WITH DAWNE AND BILL, AS WELL AS MY DOCTORS AND NURSES.
COMPADRES BORN RARE
MOMS & DADS
WIVES & HUSBANDS
THINK NOT INHERITED
CONGENITAL VASCULAR ANOMALIES 1
PORT WINE STAIN
VASCULAR STASIS ULCERS
GOOD & BAD DAYS
BED-RIDDEN AT TIMES
A JOURNEY STARTED, INTERUPTED & REJOINED
Seen, yet not Heard [1st ed.] was Bill’s first attempt at  journaling about his 1997 corrected diagnosis of Klippel-Trenaunay Syndrome and  website development. This was 2002 and it required him learning hardcore HTML coding. Ouch! In the intervening years between 2002 and 2008 several life changing things occurred. He cared for his Father in his last days, 500 miles from Dawne, as Bill’s dad passed away from cancer. 2007 had Bill in the hospital for major neck surgery. 2008 to 2013 brought us the joy of our first grandkids and Papa Daycare. In these years, specifically 2011, the 3rd edition of Seen, yet Not Heard was published. It brought with it 14 years experience learning and living KT and an evolution to Visual Coding. In 2011 Dawne’s father lost his battle with cancer, with many long distance trips for Dawne and Bill between Northern and Southern California, 500 mile trek for them.
2013 brought an end to Papa Daycare as Dawne was diagnosed with Breast Cancer. Rocked their world! Fulltime attention turned to her care and treatments. And Dawne fought yet another battle with cancer – thyroid cancer this time. Thankfully, Dawne is double-cancer free now. 2013 also saw Bill hospitalized for a simultaneous Cellulitis and Lymphatic System Infection. In 2014 the ISSVA published its blockbuster diagnostic classification system. Bill worked to learn its implications and communicate these to our Born Rare community. He found tremendous peace and gratitude in being alive and in volunteering fulltime in support of our Rare Syndrome family. Dawne joined in as she offered her personal support. She took on their public T-Shirt Campaign in support of the KT Support Group. She and Bill were and are health and life advocates and partners as they fight off the medical and life unexpected for both of them.
Then 2017 came and along with it Bill’s hospitalizations for Pneumonia and Heart Monitoring. These thankfully concluded unremarkably. Bill’s health then took yet another unexpected turn. He was sacked by a Cerebellum Stroke. The total ramifications of which would not be known until 2019. More on that later. That said, Bill recovered quite quickly from the brain stroke. For our K-T companions, Dawne and Bill completely lost sight of life with K-T. They had a new normal to consider – Bill was zapped by a brain stroke. Dawne’s cancer after-life did that too. Dawne now faces a lifetime of Chronic Lymphoedema.
AND THEN BOOM! The Klippel-Trenaunay Syndrome Ghost paid Bill a nasty nasty visit. It was 2018 and that sneaky Ghost put him in bed 2,000 miles from home, then into the ER, and then into inpatient care for an acute escalation of his Chronic Vascular Congestion. It also independently found him on the outs with Support Group administrators for standing against the bullying of a KT compadre who sought moral support while navigating the emotional hurdles of being born rare. There are those times you unregrettably act despite popular opinion, particularly when you have professional training that contravenes popular sentiments.
AND THEN HOPE and a DOCTOR’S DEDICATION FOUND BILL! Dr. Tollefson answered a desperate call, an eMail. She, the Ghonda Vascular Center (Mayo Clinic), would challenge his “inoperable” diagnosis. Dr. Tollefson arranged for full diagnostics and then an intervention/operation. They cleaned up congenital vein malformations in both lower extremities.
2019 was schedule to be a recovery and breakout year. Not so quick! Remember the unintended medical consequence of Bill’s stroke mentioned above; apparently his Parathyroid was instructing his body to sleep from 3 AM to 3 pm, It blunted his Analytical Mind – he resembled more zombie than human. Yikes! And then World Pandemic 2020 hit. And the World had its own Beast to contend with. Dawne and Bill self quarantined from the very beginning, starting in February. Hard for many. Bill’s prescription drug induced Hyper Parathyroid assured he would sleep through most of it. As a comedic aside, Bill’s cell phone bill showed 2 minutes of calls for an entire month. That’s a lot of sleep without much conscious interaction with the world.
Meantime, through all of this Dawne had lost her job due to her company’s unwillingness to wait out her recovery. So much for modern day consideration for those handicapped by Breast Cancer. Adding burdens and steep challenges, Dawne’s mom had been diagnosed with cancer. Off to Northern California with most of their household belongings in tow and into a 24-7, 365 caretaker role for Dawne. What was an early forced retirement for both Dawne and Bill now is a fulltime – and then some – Conservatorship and Caretaker job. Oh my, of mice and men and the fragility of best plans made in life!
It’s early 2021 now and the Morning Sun shines and warms hearts and souls. Bill’s Parathyroid corruption is over – the outcome of a very long detox from that nasty anti-cholesterol drug he was taking after his Brain Stroke. Bill’s back to a normal sleep cycle. His muscles are slowly recovering from years in bed. He can walk the block now. His brain is fired up and his passions have returned. The 2020 SARS COV 2 virus has hopefully run its course. And, Dawne and Bill have had their Pfizer Vaccine shots, with almost full immunity likely in the coming weeks. Dawne has one less fulltime patient to attend too, although she is exhausted and in need of her own nursing.
Dawne and Bill found themselves asking these last weeks what had happened to Bill’s journal? It had fallen into total disarray. They asked what’s next? After considerable thought, a massive restoration and a 2 year Farewell Tour. Dawne and Bill look forward to a less public life and a true retirement. They are 65 and 66, respectfully. They work to cleanup the med-science aspect of the Journal in hopes that it will offer referential support beyond their retirement. They also strive to say thank you to all of you for your encouragement and support these last 16 years. Thank you to all of you!
In many respects Bill and Dawne hope this Journal lives on. They still don’t see a street-level resource as Bill likes to call this. Moms and Dads and Kids sure could use a book that doesn’t slant towards medical jargon and med school terms and vocabulary. It’s that legacy Bill once strived to be. Who knows maybe they will get to that point these last 2 years. An important message in their Journal will be that in view of the many many ups and downs of living with a rare syndrome its understandable why their born rare community gets exhausted, even exasperated. All in all though the above chronology sure puts an important filter on this life picture. “Regular” life has a set of challenges that KT life-skills sure seem to prepare us well to handle. An equally important message is that wedding vows, “for better or worse”, didn’t portend this. Bill says he has a deep affection for Dawne, and every life partner, who walks this long and winding road with those Born Rare.
Our beliefs &
. . . EXPERIENCE IS 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
[ 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.
TOUCH THE SKY . . . KISS THE MOON . . . EMBRACE THE SUN
See, so that we may speak;
Speak, so that we might hear;
Hear, so that we can do;
Do, so that we find peace.
Morning light brings subtle ease, like tomorrow’s innocence awakening Night’s resting blossoms. Graciousness has constructed her paintings! Hearts’ have tailored emotions! Movements’ have mastered shadows! Dreams have fashioned majestic words!
Our goal is to provide accurate and transparent information and resources to the entire Congenital Vascular Malformation community. It’s 2021 and we constantly hear that many people born rare, their parents, their caretakers, and their families do not have access to experienced physicians. They search for answers, support, and open ears, hands and minds.There is no adequate replacement for skilled physicians. Always, always, always take your homework to your personal physician. Information and resources reported here are a starting point only. We are born rare and searching as you do – it’s been a 16 year endeavor and we share our journey in good faith hoping it helps our community, particularly when they have nowhere to turn to.
BILL & DAWNE’S BLOG
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Born Rare, Living Valiantly
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With the aim of helping as many people as possible.
Seen, yet Not Heard © ® ™ 2002, 2005, 2011, 2021