Congenital Vascular Malformation Community
bringing in the total picture, our inspiration the ISSVA Diagnostic Classifications
| Compendium | | Syndromes & Symptoms | | Table of Contents |
DIAGNOSED AT 43 WITH KLIPPEL-TRENAUNAY AFTER BEING HARMFULLY MISDIAGNOSED OTHERWISE, ONLY TO EXPERIENCE THE MEDICAL CLASSIFICATIONS SHIFITNG INPLACE, WE EXPAND OUR FOCUS TO INCLUDE THE ENTIRE SPECRUM OF CONGENITAL VASCUALR MALFORMATIONS TO BETTER UNDERSTAND COMMON AND DIFFERENITATED SYMPTOMS AND SYNDROMES
“Bill your new edition of Seen yet Not Heard
is pure genius. I love the focus on information that explains the biology of our conditions.” (April 27, 2021)
Seen, yet Not Heard
OFFERRED IN THE SPIRIT OF ADVOCACY, AWARENESS, AND COMPASSION
about congenital vascular malformations
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- 💜 What does my Baby have ?
- 💜 Are there doctors who are able to diagnose and help my baby ?
- 💜 Where can I talk to people who travelled this road before us ?
- 💜 Who are you Bill and Dawne ? Seen yet Not Heard?
- 💜 What is this online outreach about ?
- 💜 What motivates you both to share your medical and personal story ?
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RECENT POSTS IN TENACIOUS TIGER
- University of Kentucky Vascular Malformation Fact Sheet
- What is a RASA1 gene mutations relevance?
- Klippel-Trenaunay Syndrome [ explained ]
- Build health literacy for life [author Barbara Kondilis]
- New diagnostic procedures and interventions for patients with systemic lymphatic disease [May 13 Zoom Symposium]
WELCOME
At 65 and 66 years old, respectively, our mind turns towards making sure all those who travelled with us know how much they helped us. How much they motivated us. How much they changed our life. How much we love and deeply appreciate their accepting us and encouraging us.
WE SAY THANK YOU TO ALL OF YOU.
– Dawne & Bill
. . these are the more personal side of us
| Raise the Sails |
HELLO FRIENDS,
FOLLOWERS, FAMILY
We’re right in the middle of refreshing our Journal. This will be it’s 4th edition. Thinking enough of it is in place now to make it available now. Hoping the design style meets with your approval. The style sheets we chose will automatically reframe for Smart Phones, Tablets, and PC’s; meaning its visual structures meet open standards to allow people to view on any device they choose. This modernized style is different and has taken us a bit to get used to ourselves.
For those who are new to us, Bill was diagnosed with Klippel-Trenaunay Syndrome very late in life – his 1st medical intervention-surgery came at age 63 . We write to convey experiences living while born rare, with an eye towards parent’s experiences and concerns. Dawne is a 40 plus year caregiver who shares experiences with wives, husbands, life partners. As avid investigators of medical literature and attendees of medical support conferences, we also write to provide a layperson’s perspective on studies and treatments hoping the complexities of medical literature and protocols can be explained in a relatable way.
We will reference professional literature as much as we can. We will also state when we’re summarizing that literature and when conveying anecdotal reports from the thousands of people we have interacted with over these last 20 plus years.
WITH MUCH LOVE AND GRATITUDE,
– Dawne & Bill
If you’ve been diagnosed with any number of congenital vascular anomalies or syndromes, such as those listed in the Top of Page Header, then I’ll bet we have more in common than not. If you’re a parent, then you and my parent’s likely had, would still have, similar questions and concerns.
Bill
WELCOME BORN RARE SUPPORT COMMUNITY
Again, THANK YOU, THANK YOU, THANK YOU so much to the many who reached out to us, who followed us.
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Bill’s Born Rare journey started as an undiagnosed baby, moved on to a misdiagnosed child and adult, followed by a Klippel-Trenaunay diagnosis at 43, and recently a 180° turn leading to life changing interventional surgery at 63. The road travelled introduced us to a larger community that included others with similar, but differential diagnosis and their parents and families. Curiously, many did not have exactly what Bill has, but what doctors call “differential diagnosis”. This motivated us to expand our research, share with, and advocate for other syndromes and diagnosis within the grander spectrum of Congenital Vascular Anomalies.
our fellow travelErs are RARE.
We thank them each and every day for their open hearts and hands
THEY ARE ALSO CURIOUS,
TENACIOUS, STRONG, CREATIVE,
DILIGENT, PASSIONATE, COMPASSIONATE.
Dr. Billerbeck. There is that one doctor who you don’t forget. They listen. They take your case home with them. They do research. They bring you options and solutions otherwise that you would never hear or choose. Dr. Billerbeck was my General Practitioner who had treated me for constant outbreaks of Venous Stasis Ulcers. Unable to stop these, he referred me to a local Dermatologist who took his turn at bat and then referred me to the big city (San Francisco) Vascular Specialists who had nothing more to offer. When I returned to Dr. Billerbeck’s care he handed me legacy medical information about pre-antibiotic treatments. Get this – Brown Sugar Cane ! That single prescription saved a double leg amputation. He changed my life constructively forever.
Dawne. We met as coworkers April 1973. Dated heavily late summer 1973. Engaged September 1973 and married June 1974. We put together a timeline of my recent hospitalizations and longer term home care events the other day. Add fulltime nurse to her unconditional love nd support.
Dawne is my friend, advocate, partner, and so much more. And apparently these weren’t good enough for Mother Nature who turned on her – she is a 7 year Breast Cancer Survivor and 6 year Thyroid Cancer Survivor.
Michelle & Robert. These two are my kids. Now adults they gave me a life I had always wanted. Their zest for life, the friends they developed, the chance to be Dad.
These two let me be Coach to them on so many important aspects of life, well beyond the Soccer field.
And yet it was the Soccer field where I was the most surprised. K-T Syndrome had prohibited athletics to me as a youth and here I was in my adult years given the chance to enjoy what I had missed as a youngin’.
Rick & Michael. The two handsome boys in the forefront are my bothers. Dad & mom raised me to do everything they did. No exceptions. No excuses. They looked at me and my funny looking legs and said nothin. They kidded me about my big ears. My big teeth got mentioned often. Whatever I did physically, they one upped me making sure big brother didn’t get to big for his britches. In every respect they raised me too. I am forever grateful they did.
Melissa. The K-T family stretches across the world. Melissa lived within 20 minutes of us. It was a group invitation to a “family” gathering for us to finally meet each other. A mom. A wife. A career professional. A personal journal that is a story itself. Melissa’s warmth and grace immediately had me feeling like we had grown up together and never separated when in fact it was like meeting a long lost sister for the first time. K-T raises people with big hearts and Melissa has a very big heart. Her husband Todd and her daughters took us into their hearts at first glance – Dawne and I were family in an instant. Words don’t adequately describe how special this family is.
Todd. In our Born Rare community are husbands, wives, life partners who are more than the labels just mentioned. These are people who unconditionally support their counterparts. They participate in our meet ups. They ask questions. They provide amazing support of our community. Todd is a king. He is also Wyatt Earp’s son by another father and mother which is a not so secret inside the family tip. Dawne and I held a local gathering for the KT community. Todd and Melissa came. By day’s end Todd had connected with all of us. The richness of our community is enhanced by wives, husbands and life partners who adopt us as their own. As noted above, Todd raised daughters who mirror his graciousness. Todd didn’t stop at our community gathering. He and Melissa invited us to join their families, their parents and cousins, to become a part of their family. All of this came because being born rare is our special connection.
Gordon. Introduced to Gordon in my 1st medical support conference for Klippel-Trenaunay he showed no hint of having been born rare. He queried me about my journey, saying little about his own.
About 1 year later he travelled through our hometown. He would not pass through without also stopping to visit. Compassion. It was then that I learned of his medical- science shattering journey which included varying diagnosis over time and his radical interventions.
Gordon is a prime example of having an associated and differential diagnosis – CLOVES. Strength and determination is a word that comes up often when describing those born rare. So is having a bright mind.
Fred. Wow! We met through a medical support group for Klippel-Trenaunay Syndrome. What might not be evident to most people in these groups is that men are in the minority. At times you can feel like you’re the last man on earth in these groups. And then Fred reaches out; life brought me a brother.
Fred is an icon. He is a warrior. We are so fortunate that he shares his K-T story. While I often speak in our groups of my personal experiences with restricted athletics and work hours, Fred conquered these. Fred is a retired US Postal Worker.
Moms and dads – yes , we K-T kids have full lives. Full careers even. Can you think of a job that has people working on their feet any more than a Postal Worker? Not many.
I am fortunate Fred is my K-T brother and personal friend. Fred doesn’t go a week without reaching out to check on me. By example, by action, he reminds me to be more compassionate, to be a better friend. AND, I’m not alone in his circle of outreach. Fred is a genuine warrior. A quite one, but every bit the hero. His version of KT comes close to mine, yet still exceeds my relative complexity. I know he deals with pain everyday. I do too. Yet, he so rarely complains about it.
There is a bit of additional life with our story. Fred and his wife befriended my brother Rick. When I say KT family it means that it’s family in every sense of the word.
Ruby. Ruby like many in this dedication has a more extreme version of Congenital Vascular Malformations than me. What surprised me was that I had gotten more medical attention than she and she suffered accordingly. Yet, with every contact Ruby’s concern was not herself, but how I was doing. In life we are lucky to meet a handful of people who are “other person” directed. Hold these people close. They are a rare gem.
Ruby taught me that there is a theme throughout our born rare life. When you are part of a community that is 1 in 100,000, you have a special passport to the world. Ruby lives in Iceland – known to the world as a small nation. I can only imagine that her local community has very few people born as she was.
Ruby like so many in our community is an enthusiastic person, quick to laugh. We share personal experiences and anecdotal solutions. She a citizen of a socialized medical delivery system and I a citizen of privatized healthcare. Leaving the political-partisan debates aside we know the bloody details about each system, and regardless we relied on each other to ferret out the best information and applications from both.
Ann Marie. When I’m asked about life after being born and raised rare, Ann Marie’s life story comes to mind. I am constantly reminded that K-T kids have spunk, have determination, have vision, among so many other attributes that build very capable and creative entrepreneurs – and this while raising children to boot. Ann’s warmth and sincerity no doubt shine through in all she does. Ann is one more of the many who have travelled to meet in person a fellow traveler – people who start as strangers and quickly become special life friends.
Ann Marie is a whirlwind. She is born rare, She is a mother. A wife. She builds her own business brand while keeping super busy with the full time commitments of these other passions. When I think about what would I want my daughter to be I would say happy in life. My daughter is a high energy, passionate risk taker. So is Ann Marie. I do not know if being born rare has an impact on her. I do know that she is an amazing person who any father would be happy to pint to as a mentor, as an example for their daughter. We met Ann’s father in person and see why she is a shining light.
Ellie. Another quiet ambassador. Ellie pursues her PHd. She travelled from Canada to Southern California on personal trip and when doing so reached out to Dawne an I. We arranged for a regional gathering of KT affected and their families. It was s small gathering, but it bought together US and Canadian communities. Ellie retuned to Canada and in another trip to the US, but a Northern California trip this time, she brought her parents and sister to meet us. There is this amazing quality of life that being born rare brings with it. Its not just those of us born rare that are ambassadors – its our families too. What was an just afternoon to the world was lifetime memory of encouragement and normalcy to me. Reaching out to Ellie recently we learned that what was literally moments in time truly were inspirations.
Cally. Advocacy for those born rare doesn’t only come form being a parent or a patient. Cally is a professional graphic designer who volunteered her assistance and labor to improve the presentation of Seen, yet Not Heard on the web.
My Journal had grown into a resource for others and followers were encouraging us to expand and increase its content, its reach. She labored and created and guided us. And we hit a technical wall, a financial wall. WordPress Free didn’t allow us to access its core code – no CSS access.
“Free” WordPress while being a great startup for me does require a minimum $300 per year commitment to gain access to core code and plugins. We’re not a commercial site, so funding hampered our project. Cally’s labor of love will never be forgotten by us. Cally persisted. She pushed our 3rd Edition to the limits of “free” hosting and development.
Lauren & Amanda. It takes a village is a modern day saying. It’s cliche wrapped up in partisan misunderstandings in the United States. In the UK Lauren & Amanda turn the phrase. It takes a Mom & Daughter. Amanda, mom, contact us when she closed down her carreer to put 150% of her effort into finding answers and treatment for her daughter.
These two had determined that the UK did not have a dedicated advocacy and support group for Klippel-Trenaunay Syndrome. She would create it and set out to make a difference in the UK. When we talked about our mission field as a personal endeavor and not a commercial enterprise,
We agreed to providing our “homework” on definitions and resources if this would help her in any way. The United States versus Europe versus the World gap in medical care and terminology a concern.
When I looked up weeks later Amanda and Lauren were flying, They were full speed, having funding events and doing public awareness campaigns. And then I followed Lauren’s work, born rare, and having her mother’s energy and compassion for other’s born like she. How can you not be impressed? A national campaign in a European nation so dwarfs a personal endeavor like ours.
Our KT world is dynamic. Separated by language I do wonder what it would be like if we had a place to congregate and coordinate on research and other constructive work.
Lex. A warrior in the Netherlands Healthcare world. Lex is a leader of the Dutch support group for CMTC who travels other nations in Europe assisting other such groups too.
I have it on my bucket list to visit and attend the medical conference he organizes in the Netherlands. CMTC as his organization calls it is new to me as I expand my focus from KT to these 8 major diagnosis in the Congenital Vascular Malformation family.
See CMTC-OVM
Dr. Mossler When we moved the family to Southern California we were certain that we had lost our golden healthcare in Dr. Billerbeck. And then Dr. Mossler walked into the exam room in SOCAL. He too struggled to put an end to Venous Stasis Ulcers, although he did support my use of the Brown Sugar as prescriptive care. Together, we saw a decrease in the number of episodes and the length of time to cure these. That said, Dr. Mossler was not satisfied because I was still experiencing these with regularity and missing work as part of my recovery regime. He sent me to the Scripps La Jolla Medical Clinic for a specialist exam, calling it informally the Mayo Clinic of the West. This after the same local drill in SOCAL that we did in locally in NORCAL. It was one specialist after another who had no clue what to do. They consistently said “we can’t help you”. Scripps La Jolla Medical Clinic’s Chief Vascular Surgeon nailed it – Klippel-Trenaunay Syndrome. Dr. Mossler, like Dr. Billerbeck broke through the medical provider noise. They changed my life constructively for the better.
Dr. Budman. And then time marches on. Dr. Budman walked into the exam room once Dr. Mossler’s. He closed the door, but not before he stuck his neck put and told his nurse not to disturb him for a 1/2 hour. He had read every word of my very detailed history. He listen to my storyline and the unconventional prescriptions we had been using to prevent a return to Sacramento’s 4 year ordeal in a wheelchair and almost losing both lower extremities to amputation. His response was keep doing what you are doing. My continuity of care could not have been better. Dr. Budman is that doctor who does his homework, listens, and has an open mind. He communicates clearly and in terms the common person can understand. He is as smart as they come without being caught up in academic language and prestige. And look at his man’s picture. He’ retired early.
Dr. Daoud. When Dr. Budman retired I was once again in panic mode. Quality of care meant having a doctor with extraordinary openness and a willingness to treat my regular issues with KT as a patient-doctor team. And then I remembered that Dr. Mossler was compelled to work through an HMO Medical Review Board in order to get me referred to a local vascular specialist. One doctor on that Board, Dr. Daoud, was a consistent yes vote. Dawne tracked him down. He had left the medical group and opened his own practice. He is my general practitioner to this day. And he is my advocate, my mentor, and I dare say my friend ( as much as tour physician can be). There are very few people in life I admire in just about every level of human endeavor. He started fighting with California Insurance companies from day one. Get this man to the Mayo Clinic now he argued. And despite his professional pleas profiteers denied the one place that had the people, tools, protocols, and the culture to dispute a lifelong misdiagnosis as “inoperable”. Dr. Daoud open to new patients.
Dr. Fishman. In Miracle on 34th Street the Macy’s Santa tells a distraught mother to go to Gimbals, they have the item you want for your son. Absolute heresy, even in today’s woke world. Dr. Fishman likely understands the constructive outcome of this moment. I’ll explain.
Year after year I listened to Dr. Fishman speak at our medical support conference. He is a premier Surgeon that works out of Boston’s Children Hospital. The team their is second to none and leads much of the world in their examination and treatment of Klippel-Trenaunay Syndrome for children. Given the chance to have him as your doctor take it. [Scene set]
In 2014 after a decade of hearing his presentation I asked a courtesy of Dr, Fishman. Would he do a visual exam and take my word on what the Sonograms and MRI’s would say? I explained that at 60 year of age I likely had one last chance to do something constructive. He agreed.
And then the good doctor changed my life forever. “Were I you, and I mean as Dr. Fishman and I had your symptoms, I would march into Dr. Gloviczki’s office and ask him the same questions you just posed.” Wow! He just said in effect “go to Gimbals”.
On the practical side, there is no better recommendation than getting a doctor to refer you to a doctor’s doctor. If you are an Organizational Consultant you should be delighting in this dedication.
If you are a parent, move mountains to get your child in front of Dr. Fishman and/or the team he works with.
Dr. Gloviczki. Meet me on a street. Meet me in the halls of the Ghonda Vascular Center. Dr. Gloviczki would not remember me. He might remember my son in-law whose sunset photo art may have made it from his office to this home upon retirement. But that’s another story for another time. This man is a living legend who retired from the Mayo Clinic. I missed being one of his last regular patients by about one year.
In 2014 we headed Dr. Fishman’s advice and requested California Healthcare Insurance carriers send me to the Mayo Clinic because no one in the State had the necessary experience and too kit to properly examine, diagnose, or treat my KT symptoms. We failed on the latter endeavor al the way through the summer of 2018.
And then, I circumstantially ended up just over an hour from the Mayo Clinic, actually more like 1 block at one point i time. I was hospitalized via the ER at St Mary’s hospital. And you know the rest of the story as they say. Avoid St. Mary’s hospital. Go direct to the Gonda Vascular Center. And see Dr. Tollefson’s dedication above.
Dr. Gloviczki, thank you for your decades of work in bettering the lives of people born rare with Congenital Vascular Anomalies.
Shea. We make it no secret that our mission includes supporting the moms and dads of those born rare. Each and everyone we meet is a warrior. I met Shae on a support site for Klippel-Trenaunay. I was taken by her incredible handle on the medical jargon and her amazingly positive attitude. Her child, born rare, had a fierce, smart, and compassionate advocate of a mom. Shea could be the US President under the right circumstances. What she is in the meantime is an entrepreneur on top of being a super mom and advocate for her kids. When I worked I was a wild workaholic. I don’t think I could have matched Shae’s enthusiasm and creativity. She reminds me of my father as a parent in many ways. Her born rare son has an prime example of how to approach and tackle life.
Sarah. I recall my mother in her last days saying she had not done enough. Not true. When I meet mom’s like Sarah I reminded that we need to let mom’s know that they do it all. When they are mom’s to those born rare they do even more. Sarah is one of those mom’s. Like Shae we have not met in person, yet today’s social media gives is a modern day Post Office and pen pals we can exchange daily communications with. Sarah resides in the middle south in the US and our lives and influences are very different. What is not is her dedication to her children and the sacrifices made to be certain the kids have a good life. I can only imagine what its like to add to that the very real needs of a child like I was. If given the chance to support mom’s like Sarah please do.
Matt. Many years ago a commercial byline was “I want to be like Mike!”. Well, I want to be like Matt. Born rare he climbs shear cliffs and mountain sides. Who needs basketball and running anyway. I admire Matt so much for pushing the limits – for doing what normal doesn’t even do. When I think of mentorships in life and in being born rare, Matt stands out. There is nothing we can’t at least try to do. The men I have met who have KT have been strikingly reserved. I have wondered now for decades if this is a man thing or a KT man thing.
That said, were I too overcome my fear of heights, a recent condition in my unstable old age, I would be asking Matt to drag me along these walls. My favorite pastime as a kind was climbing rock walls with my father and brother. We didn’t climb sheer cliffs and such, but we did climb walls that were hid the sun from our view until we crested the top. Matt reminded me that KT didn’t take this passion away and its physical requirements are within reach for most people with KT. He is right. To be young again.
Ironically, when we did climb in our youth I had one predominant medical challenge – my nose bleed at the drop of a hat. And I mean “at the drop of a hat”. It took adulthood to correct this and even so I still bleed easier than most. As it turns out ancillary medical news was that my KT had nothing to do with the nose bleeds.
Bill’s personal dedications:
Dr. Clinton. Gerald asked me to replace him as a group admin in an international support group until I turned 65. I said yes and strive to be as kind as he was. At 66, I dedicate 2 more years to public service as did Gerald.
Dr. Clinton, born rare himself was my K-T Mentor! He reminded me that mental health is integral to physical health. It’s a perspective still not nearly as prominent as it needs to be.
Gerald taught me that we who are affected are just as capable of understanding our condition, diagnosis, prescription, and prognosis as a medical provider. IQ and EQ are not the sole possession of the formally educated. He encouraged me to write, write, write. He valued the layperson’s experiences and perspective.
Arianna. Ari wrote before I dare try. She challenged me to write. Seen, yet Not Heard was born in part because Ari showed me how to open my heart and personal journey to those who were born rare.
Please find her blog at Kisses for KTS (Klippel-Trenaunay Syndrome). She is transparent, sincere, and speaks candidly about the mental and physical realities of having a more severe version of KT than me. It’s important to see KT as a full spectrum syndrome which includes the less complex to the more complex.
Arianna’s heart and soul defines living valiantly while born rare. Her smile is a constant through all of the ups and downs of the expected unexpected. She masterfully juggles harsh realities with a zest for future endeavors. With her privacy in mind, it is important to to say that Ari’s journey with KT far exceeds my own struggles. She is that warrior, the one who is first to battle, first to return to battle, and leads us all with her intellect, wit, heart, and soul. Papa proud of this young women.
Dr. Tollefson. There are not enough words and time to honor this amazing doctor and humanitarian. Dr. Tollefson is a leader at the Ghonda Vascular Center at the Mayo Clinic, Rochester, Minnesota, USA. In the midst of unbearable pain, unable to put my feet any lower than 2 feet over my waist, sleeping 20 hours a day to escape pain, fighting a raging bacterial infection and an almost complete blockage of my lower leg venous return, I sent her an email asking for help. She called me at 7:30 pm, still at work after an already full day. Without hesitation she fought with my insurance company, contacted my California doctor, and cleared a pathway for me to be examined by a multi-disciplinary team at the Center. She literally saved my life. Her compassion and professionalism is what guardian angels are made of.
Dr. Bendel. When medical cases show up in doctor’s in-baskets and waiting rooms, there are those doctors who immediately take extraordinary interest and steps to help. Dr. Bendel did, and I imagine does on a daily basis. Her commitment to comprehensive vein mapping and the use of modern medical tools became an integral part of my 63 year old person’s life saving team. I will forever remember her compassionate touch as she reached out to me after the doctor team examination and feedback meeting – “we have this, you have this.” I knew then that 63 years of waiting through the never ending “we can’t help you” was over. A doctor with a big heart and warm touch, making it two one on my new team. I was allowed to be a human being that day, to cry, to stop being the angry advocate and be just a patient, a very very grateful patient.
Dr. Bjarnason. And then there were three. When the Ghonda Vascular Center at the Mayo Clinic pioneered the multi-disciplinary team approach they must have added an extra dose of human compassion to the mix. When Dr. Tollefson put together the team she did so on short notice. I was stranded 2,000 plus miles from home and taking refuge in my Uncle’s home while being cared for by a fellow KT traveler who I had never met in-person before. It took every once of mental strength to make it to my bathroom once a day, let alone handle the 1 1/2 hour drive to the Mayo Clinic. Dr. Bjarnson agreed to stuff my case into an already over-filled docket. I speak of doctors Tollefson’s and Bendel’s compassion and commitment to excellence. Dr. Bjarnson was the 3rd such angel in that room. These three doctors have an uncanny and very special professionalism that is as much or more heart and soul. They breathed life back into a very tired 63 year old man – a person who had worked for a better medical life for 20 years, the overwhelming majority of these as a volunteer in a support group birthed by the Mayo Clinic. I was a volunteer formally diagnosed as inoperable for 63 years. And when my Crisis came, Dr. Bjarnson said yes – yes we can take a look – yes, we can take a chance – yes, we can give Bill his senior years without pain, with hope, and return freedom denied.
Yvette. My first friend in KT. Every day for her is joy, An opportunity to live and live big. Compassionate, driven to adore life, Yvette shows us all the K-T Life is remarkable when we adopt normalcy while diligently caring for our uniqueness. Her heart is golden. Yvette flew the length of the United States to check in with Dawne and I. She brought her father with her, celebrating his birthday with us that very first visit. THIS! This , while being a bigtime KT warrior. Without breaching her privacy, I can say that Yvette is a KT warrior from a young age. She was an early candidate for surgical intervention. And you would not know it if you met her on the street. Her tenacious spirit. Her compassion. She is a friend for life. She is someone I strive to be. She is my sister.
James. My compadre. He laughs. He loves. He lives. I know that sounds cliche’, but it it’s is a great description of him. James is an actor, comedian, writer, music agent, and so many other people wrapped into a powerful bundle of human creativity. And even so, he reaches out to us, his fellow travelers to make sure we are ok. He came to us as a friend in KT. It was not long and we were simply friends. He is another KT warrior who came to the medical challenges far early than me and far fiercer battles these were. Yet, by his account, a message Ari has shared with me as well, KT life is not about comparing degrees of difficulty, rather it is about rejoicing in companionship and encouraging fellow travelers to live large, to pursue their dreams relentlessly.
Gabby. We met Gabby in person as she agreed to a stop over in Southern California to include a visit with Dawne and I while on her way to Hawaii with James. From England to our doorsteps, an extraordinary step away on a very long trip, to engage a K-T couple. This is chosen family, a constancy in the K-T world. I can’t say this enough, the KT community is extraordinary. Us who are born rare collectively have loving support that makes this journey so much easier to do. Gabby your unconditional love and support remind me to be a better person, a better friend to our fellow travelers. I speak of Gabby as a wife, a life partner to James. She is love. She is lovely. She is a friend who came to Dawne and I that we would not have known but for Mother Nature having this propensity to stir the pot, to create uniqueness. Thank you Gabby for sharing the road travelled with Dawne. I swear James and I spoke far fewer words than the two of you that wonderful night we met – and we beamed watching you two.
Hannelee. An important part of advocacy for those of us born rare is active participation and leadership. Hann has been my partner, my rock, in the administration of an International Support Group for K-T. She herself born rare – she is now a fulltime nurse after having a career in Emergency Response Services.
Hannelee is a mom. A wife. A very active bicyclist and adventurer. A photographer. An awesome work partner. She is a nurse. She is a friend who came to me late in my life precisely because we share in a commitment to pay it forward. We are literally world’s apart physically and next door neighbors in spirit. She is a brilliant and bright professional advocate in the worldwide K-T community. We have never met in person and I hope fate changes that. Australia is literally on the other side of the globe. KT shrinks the globe. We are chosen family.
Tracey. A mom. Her compassion matches her outgoing personality as she volunteers her time as a group moderator in an international KT support group. Tracey is in that group of K-T affected that leads. And this group is not a small one. There are so many more I will point out as we go forward. I often describe to my family and friends the tendency of those born rare to excel beyond the average, the normative. That’s Tracy. Yes, K-T women bare and raise children. Have work careers to boot. In time I hope to bring Tracey’s story to the world. I have not met Tracey in person and hope this is not the case in the years ahead.
Allessandra . Facing life altering choices is a given, being born-rare multiplies these by an order of magnitude so often not comprehended by the 99%. The strength of Allessandra. inspires me. She is a continent away from me, yet I try to follow her journey from afar. She was first to volunteer on a public awareness campaign. Her courage, her amazing willingness to publicly share her journey is inspirational. I bet novel and book worthy. Allessandra is a KT warrior I hope to meet in person in the coming years. She too lives Continents away from Dawne and I. We are separated by language as well. Our Born Rare journey brought us together.
Cheryl & Matt. My parents were quiet warriors. They did not speak with me about their concerns and regrets as pertains to my congenital symptoms until their last days. I had no idea they harbored guilt feelings. There was nothing they did to regret. Their revelations caused me to notice and support the parents of those of us born rare, still does. Cheryl and Matt are parent’s of a KT affected daughter who has struggled with early and continued manifestations of the worst KT can offer. They have spent more time in hospitals nurturing and advocating then just about anyone I know. What is extraordinary is these two parents also have so much compassion for other affected kids, these kid’s parents, and us affected adults. Their calm, their resolve, their kindness, their love, their resolve, these are their gifts to our community. My parents would have been drawn to these two. They are parents I would adopt if they would have me, only I’m likely ten years older than they are.
Chloe, Jen & Peter. We met Chloe when she was just under 2 years old. She and her parents lived about 2 hours from us in a neighboring County in Southern California. We met collective dynamite that afternoon, and I mean to say all things positive. Chloe is the future generation and being born rare may well be the fuel she will use to change the world for the better, We spoke of parent’s above being key in the outcomes kids born rare will experience. Jen & Peter that day and provided Chloe all the space she needed and wanted to explore, to learn, to live a life kids thrive in. I speak of my parents treating me as my brothers were treated. It worked very well for me. Positivity, mindfulness, are life approaches that give us who are born rare a leg up. Pun intended. It has helped me immensely to be a part of their journey as Jen & Peter teach me. as they motivate me. Chloe like me is the eldest child with siblings pushing and balancing the family dynamics. Her life challenges remind me of mine. Her level of KT feels similar to mine. Her energy reminds me of my childhood energy.
Geneva. Parenting us born rare kids so often means being our best friend in life too. Geneva is that parent. Her grace, understanding, and patience was evident to each of us she engaged. She is our parent while caring for her own son. She was loved by many of us KT kids, from young to old. In many respects Geneva was our parent, our adopted parent. There are few who could have handled the parenting job or her adopted parenting job with more grace, more love, more compassion and more insight. Geneva battled her own serious illness. She passed away and I miss her greatly.
Cindy & Phil. If the world were to pick ambassadors for World Parenting these two would be my choice. They adopt children in need of serious care and treatments. On of their adopted children has very complicated congenital vascular anomalies. That’s plural. They spend incredible amounts of time and energy searching the world for needed resources, skilled physicians. They take their child to needed examinations and treatments which take place from Massachusetts to the California. We asked if we could meet up and introduce ourselves to their child and cheer him on as he received needed treatments. They agreed and a bound was created, a lifetime bound. I spoke of Cheryl & Matt above. Cindy & Phil would likely decline my Ambassador nomination and in turn nominate Cheryl & Matt. Straight up these two couples could share these honors. I can not think of a couple that has more in-depth and diverse understandings of the med-science that drives the treatment protocols for Congenital Vascular Anomalies. If laypersons could receive a PhD based on personal experience and endeavor to learn Cindy & Phil just might be on the inaugural roster.
Josh. We met Josh when he was new to having doctors who could help him with needed interventions. It was not long and his family moved out of State. This trooper gets on a plane travels in the mile high skies and receives regular Laser Treatments which target several different types of vascular anomalies. Subsequent visits were at Southern California Beaches where Josh must cover up to protect himself from exposure to the Sun. And he was this bundle of joy and so polite and inquisitive. In so many respects he is both child and adult at the same time. It would be so easy for him to get disenchanted; he does the opposite. I see another young leader in our born rare community. A world leader no less.
Michael. His spirit and tenaciousness carries all of us. His courage infectious. Michael changed me – he changed my life. I’m not alone.
Michael and I developed our friendship via the internet, via eMail. We met before Facebook was king. His physical challenges far exceed mine, yet he would not let me speak about my good fortune. I mentioned the latter theme above when speaking about Ari and James. Michael was a middle school kid when he chastised me for speaking of my level of KT being less harsh than his. This was a young Michael tutoring me on the subject of living born rare. What a powerhouse!
The picture here is MIchael, fulltime Michael. Like most of us he reserved his misgivings for his time alone. Little brother Michael. Geneva, who I spoke about above, is Michael’s mom. These two were one of my first introductions to a mother-son team. In Boxing terms, a very strong One-Two Punch.
Trisha. We seek examples of those born rare who tell the world I am me, I pursue my dreams, I live. Trisha is one of the first KT compadres I met having attended a breakthrough National Support Group for KT. I had been asked to lead a table chat group on a touchy subject. After we wrapped up Trisha and her mom stayed for after session conversations. I had no idea which of the two had KT. It was in our casual conversations together that I learned it was Trisha. And what I learned form her was just how “normal” I was. Our community has these quiet ambassadors who may not realize how impactful they are. It took risk taking for Trisha to open up in a public place and speak about her life. She sought to finish her education and then go to work, as I recall the conversation. And true to her plan, she did exactly that. It was several years later and a return visit to our medical support conference when Trisha and I choose the same wall spot to sit on the floor and relieve our vascular down pressure, our pain. She likely doesn’t know just how much her emotional support meant to a struggling man who had recently learned he had a congenital syndrome. Quiet Ambassadors are a very important force in our born rare lives.
Gina. Speaking of quite Ambassadors. I met Gina in much the same way I met Trisha. A medical support conference at a later date with a similar outcome. We followed each other from a distance. We all hit these tough patches throughout our life adapting to KT, to living while born rare. Gina too has a more complex level than I. What I recall is her constant smile, her ease at which she communicated. There was a point in my KT life that I hit a very tough patch, an emotional patch. Gina reached out to me and gave me a pep talk. To be frank, she gave me a big sister talk – truth mixed in with a lot of compassion. Our lives in this community thrives on extended family on quite ambassadors. It also thrives on looking up an witnessing the Gina’s of the world who have radical challenges due to symptoms of our syndromes, get radical treatments, and still pursue their passions. Become moms and dads. And nurture their fellow travelers.
Jess. A mom. A dreamer. A doer. The sheer strength and tenacity of this born rare compadre motivates me to keep pushing my limits. I missed out on being an athlete – Jess jumps her horse and rides on mornings that have most of us sitting next to the stove in the kitchen. She juggles it all with finesse and grace. Jess is another KT warrior who lives a world away from Dawne and I. KT brought us together. Her life story is one deserving notice. She is a mom. She stops at nothing. Her life story challenges us all to go, go, go. To breathe life in everyday and to pursue our passions with vigor and joy.
Monique. It is said that a picture is worth a thousand words. Here it need only speak one word – happy. I wish there was a way to adequately describe the level of pain those of us who have K-T feel each and every day. As a child our innocence and youth gave us the time and ability to experience what any child does. And, we consistently end up focused on life as any adult does. Monique is this person you see here. She is also an extremely successful career professional. A mom. A wife. A friend in K-T who also became a friend in life. We live over 100 miles from each other, yet its as if she resides next door.
THANK YOU ALL for allowing us to call you out. Our family of born rare; our parents, caretakers, volunteers, family, medical providers, and born rare compadres are essential in our quest for best in health and life.
Our dedications continue. There are many to thank and honor for reaching out to us as well as enriching the lives of others. Please check in often as we do our level best to honor the many who have improved our lives and the lives of those born rare.
Being born rare brings with it not just physical challenges, but emotional and mental challenges as well – truism – this for born rare kids and parents. Having a place that is 100% transparent is important. We will never set the metaphorical phone down or turn it off. We will not unilaterally filter uncomfortable subjects or conversations for the sake of feelings – we will provide proper venues for people born rare to express their most personal and educational experiences.
Bill
Dr. Clinton Bill started our dedications with you because you found a fire in Bill and you turned it into a bonfire. Thank you for reaching out and giving Bill permission to keep writing about his street-level writing about medical findings, treatments, and personal care!
Dawne
Until we meet again. Take care. Enjoy life. Raise your sails!
Please always know that we wish to hear from all of you at anytime. Your journey matters greatly to us. Your experiences. Your intuition. Your adjustments. Your homework. Your experimentations. Your doctor’s counsel, diagnosis, prescriptions and prognosis.
THANK YOU TO THOSE WHO HAVE JOINED US ON THIS PERSONAL JOURNEY THESE LAST ALLMOST 20 YEARS. WELCOME THOSE NEW TO OUR ONLINE JOURNEY, TO THOSE WHO ARE JOINING OUR FAMILY TODAY.
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1 ISSVA Vascular Anomalies Classifications
Seen, yet Not Heard 