The International K-T House & Mentor Program

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I have a dream!

I’m calling it the International K-T House & Mentor Program*.

So many parents first learn of Klippel-Trenaunay Syndrome when their child is born with it.  Those moments are often frantic moments, particularly for parents whose children are born looking very different from the picture they had in mind.  Making this experience even more traumatic for K-T parents is the stark reality that so little information is forthcoming from the doctors who guided their baby into the world. 

K-T parents need a regular, straight forward program that gives their child ready access to K-T experienced vascular surgeons, intervention radiologists, and the like.  This kind of program needs several components to be successful.   These are:

  1. A Mentor component which would be a K-T parent and/or K-T adult.  It would be great if these Mentors were to also have first-hand experience with a similar form of K-T as to the child being supported.
  2. A medical community that caters to the Klippel-Trenaunay Syndrome patient community delivering a flat-rate diagnostic regime/program.  This program would at least assure the parents that K-T experienced doctors are able to do initial diagnostics and map out a strategic medical care program for the child, even if this includes partnering with the child’s pediatrician and so on. 
  3. A K-T House component that opens our homes to new parents seeking short-term stays while undergoing scheduled diagnostics at a nearby K-T medical provider.  These folks would likely live near a K-T medical institution.  If opening your home is not feasible, then volunteer in a docent role guiding the K-T families to local accommodations, providing them with maps, and possibly showing them to the medical institution on their first visit including handling introductions to your K-T doctor. 

I’m looking for creative volunteers to brainstorm the components of this program and to begin encouraging the medical community to work on very concrete diagnostic programs that give new K-T parents an attainable diagnostic regime. 

This program is a jump-start on a better life for those kids born with Klippel-Trenaunay Syndrome.  It is a non-profit venture which will be staffed by volunteers from our community.  Those with funding experience may wish to work on a legal trust or foundation and I’m happy to work with you to set this up provided the outcome directs no less than 95% of donations directly to the K-T parents and K-T kids in need.  Existing foundations wishing to partner on this endeavor, please consider this effort a mutual aid program.  This is an international endeavor looking for world-wide and world-class partners.

We need your help, please think seriously about joining this effort.  If we can save just one set of parents from not knowing, or being compelled to deal with a local medical community that just doesn’t know, we will have done great things.

WilliamAntonLee@wordpress.com is the home of my personal journal which is the anchor for humble efforts to educate new K-T Parents and help our young K-T companions.  Please post your ideas and interests here, or if you prefer within the wall posting section of Facebook.  I’m new to Twitter and not quite ready to go public with my address yet. 

Thank you in advance for your help. 

Best Regards, 

William Anton Lee

AKA: Bill Lee

 

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* The International K-T House & Mentor Program ©2011 ®2011

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21 thoughts on “The International K-T House & Mentor Program”

  1. My name is Marie and I do cyrrentley live in the South of Sweden. I’m one of the founders of the Swedish Klippel-Trenaunay Syndromet Network. I’m happy to Say that I’m an educated mentor for the Swedish health care system. This mentorship I use to mentor others with KT. I have very Closeness contact with the members of the Swedish Network and have since a few years back been contacted by newly diagnosed childrens parents. I do advice them NOT TO GOOGLE the condition untill they are familiar with what exact problems their child, or they themselves, have! I have found ut devastating for Peppe without efficiwnt knowledge seeking advice on the internet….
    I would love to get in contact with you, please e-mail me at marie_weis@home.se or find me on Facebook as Marie D. Weis
    Best wishes,
    Marie

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    1. Marie … How are you doing and how goes your group? We are finally home from months of travel which included attending the bi-annual K-T Conference in Rochester, MN. Great conference with very new and interesting perspectives presented by a remarkable panel of doctors.

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  2. eMail is on the way. I will try Facebook first.

    I agree with your perspective on Google type searches completely. It is a primary motivator for asking our community to fix the information gap ourselves. I completely understand medical science and its necessity to report what it sees. But as a trained researcher and statistician I cridge everytime I read medical reports that generalize from walk-in traffic to a population that many times fallls out of sight due after being misdiagnosed or worse never comes into sight becausse they are not diagnosed at all. Almost all studies are anedotal and based on skewed populations. That said, much of my intial attempts here to describe K-T to new parents needs work to better explain the commonalities that cause such varying outcomes, sometimes outcomes when placed adjacent to each other might cause the casual observer to think their medical syndromes are not the same.

    Thank you so much for your response. I’m extremely excited to hear from you and to know that our endeavors will include international participants. THANK YOU for your daily efforts helping the K-T community.

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  3. Hello my name is Olie, I have identical birthmarks on my lower trunk and after seeing the picture of the lower trunk through Google images i couldn’t read on any quicker only to finish reading this site wishing i hadn’t! The veins in my legs are bulging out as Varicose Veins also do, so i have been to see over at least 7 different doctors to see if i could have them removed. Everyone of these doctors replied that they simply were not in a bad enough condition to be operated on. They have gradually been getting worse as time goes on, spreading all over my legs and becoming more and more uncomfortable so i have returned once again to see a Varicose Vein specialist who made me aware of K-T syndrome. As you could imagine being only 23 years old i am now living life under a large dark cloud of depression. I have booked and paid for ultrasound scans to be taken on my legs this coming weekend so i guess it will be the moment of truth to know weather i have deep veins present. If i do not have deep veins present in my legs i fear the worse. I don’t know what i am suppose to do if i cannot have the Varicose Veins removed, will they spread? Will they get so bad that they can no longer carry the blood? What then? Amputation? I am very worried! You have been very helpful with your explanation on K-T, thank you!

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    1. Your veins don’t need to be bad enough to operate. The sooner the better as far as I’ve been told. However, if your deep vein system is not competent to take on the additional load the doctors can not operate. To put it bluntly, my doctor told me that had he stripped or otherwise closed the varicose veins, I would not have gotten off the operating room table without screaming for mercy. They would have has to amputate the legs to stop the pain. I have more to tell you but must go for now. I will write back soon.

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    2. hi olie my name is michelle im 41yrs and was born with port wine stain all down my left leg, i was told only 5yrs ago that i had kt, this news came after 3 perations to reduce varicose viens, which are now worse than ever and to add insult to injury im nursing 2 varicose ulcers that are very painful abd i have to have 3 layer compression done twice a week, because kt is unrecognised i dont get any addition help although i find it really hard to get around, my family is very supportive, im in chronic pain and im very limited to where or what i can do. i really feel your pain and know what your going thro because the medical profession have no idea what this kt is or does, i had to learn it from the internet as my surgeon didnt really know much, thank heavens for these sites where we can share our pain with like minded people

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    3. Olie … First, my new technical skills in the blogging world are well …. new, I missed your post. What is the update on your condition? I’m anxious to connect with you and respond to your questions. There is much hope in the K-T medical community these days. Let’s talk.

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  4. i think that the mentor group is a great idea i was born with k-t in my leg and no doctor new wot it was my parents were sent to see so many docs and specalits who couldnt tell them wot it was my mum and dad was sat done and told that i mite never walk as i was almost 2 before i even started to stand up when i was 5 a surgen took me on and tried everythin he could to make my life that wee bit easyer but even he could not give my parents a proper diagnosies my parents always stayed so strong for me but i new deep down how much it tore them apart to watch me go through so many ops and tests and be in constent pain they never had anyone to talk or turn to i really dont no how they got through i am now 30yrs old and i have only just been properly diagnosed and for the first time in my life i feel on top of the world to no that i am not the only one and there r other people out there that are goin through the same things that i am unfortunatly my mum has died a few years ago still not knowin wot my condition that has coused me so much pain and misery in my life my dad is absaoulty delighted and feels like a huge weight has been lifted of his sholuders i just wish my mum was here to have the same feelin as she was the one how went throught everythin with me as my dad worked all time cause my mum couldnt as she was always in and out the hospital with me she was the one who held my hand and whisperd that everythin would be ok . I really think a mentor group for parents would be a great help to parents to be able to have some one there for them to talk to someone who no’s wot they r goin through i no it would have helped my parents more than i could posiable imagen . x

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    1. Thank you Sharon. Your life story, better said your family’s life story is compelling. I have several initiatives going and plan on seeing each one through. Your encouragement means a lot to me.

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  5. My daughter was born with K-T and we now seek treatment at Cincinnati Children’s hospital. I have to say we were blessed to be where we were when she was delivered and transferred to Kosair Children’s hospital for some breathing issues. There was a pediatric surgeon who had just finished her residency at the Vascular and Hemangioma Clinic at Cincinatti Children’s so she knew exactly what it was and knew where to send us. I still have to say I was scared witless at what this meant for my child. Her’s affects her upper right quadrant. She just recently underwent an 8 hour surgery to remove a lympatic malformation that had grown to the size of a softball in her short 8 month life. This kept her from moving her arm. After trying sclerotherapy and seeing that it wasn’t going to make a difference, this was what we felt would help her gain movement in her arm. This has worked well and after 5 weeks she looks great! Her hand is still swollen and we’re having a hard time getting that down, but her arm swelling has gone down. It frustrates me that I don’t have anyone to speak with regarding her, no one to gain experience from on what has worked, what hasn’t, etc. We have found a few things that have worked that the doctors didn’t tell us about. I love my family at Cincinatti Children’s, they let me experiment on different compression types while we wait for her to get big enough to be fitted with a garment that will make our life easier. My daughter is a very happy little camper, even with everything she has gone through. I am amazed at her spirited personality. I don’t want that damaged as she grows older. I know what having this syndrome can do to her as she grows and I’m fearful for sure. Thank you for the time you have put into this. I would love to be able to share my experiences with others in hopes that it might help.

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    1. Jen … Hello. How is your daughter doing today? I’m too am amazed at the spirit of the K-T Kids who undergo surgeries. The Cincinnati doctors are amazing. She is in good hands. I suspect no doctor can predict with 100% certainty what our future brings, but your daughter has a good jump on heading off trouble that once waited to the point of crisis. Thank you for your patience with my late response. This blogging thing is new to me, so I’m learning to have new disciplines. I thought I had set the blog to email me when posts came through. Up to now I had thought my writings had become a sort of private journal. Bingo, I checked it today and saw numerous postings. I feel like such a heel for missing these when they came in.

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      1. Yes, I was hoping that you were doing OK. I also see how many on here treasure this source as like many, I’m sure they feel like i do in not having much to go on. It’s not like I can pull up on the web and see if something she is going through is related since there’s just not much out there.
        Lydia is doing exceptionally well after having the softball sized lymphatic malformation removed. Her arm still stays swollen, but we keep it wrapped tightly most days. Her hand is what scares me. The veinous malformations (port wine stains) on her fingertips have been staying really deep purple and her hand is so swollen. She is still so little and growing so fast that they cannot make a garment for her to help with the swelling in her hands. Her venous malformations along her arm have remained the same. Often, the swelling gets bad enough that the bumps actually smooth over. We go back to Cinci the end of September for an ultrasound of the roughly 2 % of the malformation they left in her upper chest and neck to see how they are linked together. The next step is to do sclerotherapy for those sections and then start looking at her arm.
        I am amazed at how well her scar healed after this surgery. The sutures went from the front of her armpit to the back of her armpit and then halfway down her side. It has healed beautifully! He had more issues out of the ace wraps leaving blisters on her arm than anything. Once they had us switch to comprilan and we used a special cream those have all healed and we’re doing well.
        I have a believe that God gives these little K-T kids an extra boost of personality to get them through these times. She is so happy and you would never know there was anything wrong with her. Often times if she’s not wearing her wrap no one notices. The hardest thing for me is when she is wearing her wrap, people ask what happened-did she break her arm (with a look like you are a careless parent for allowing that to happen.), did she fall, is she ok? I often just say-It’s something she was born with, because really-would they have a clue? I feel like anytime we go out I have to give a life story on my child. I’ve learned, I don’t. I can simply say she was born with it and is undergoing treatment and she will be OK. I treasure the times we have now, while it may seem difficult at times-I’m told that puberty is going to be MUCH worse for us.
        Thank you for responding. I hope you are doing well and no major flare-ups in your case.

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        1. I sense your approach to the public’s curiosity is best. In the days before I knew my condition was called K-T Syndrome I was happy to tell those who asked it was a birthmark and it didn’t hurt like a sunburn. Now at times those that ask get a dime store explanation of the syndrome and often look like they are sorry to have asked. It’s a difficult process for me. Do I educate so that rare diseases get fair understanding or just leave things as they are. I’m sure this quandary will not be settled soon. It is good to hear from the K-T community and how they manage the questions. Stay in touch. Thank you again for taking time to talk.

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  6. Hi,
    My son has KT and will be having his firstof three-five surgeries to begin some kind of treatment. My husband and I have always taken great cautions not to tell him “you have this or that”. He is young and we did not want him to be fearful or feel that he cannot so the things physically that he enjoys. Now we are faced with the challenge of telling him about his leg and abdomen w/o breaking his heart 😦

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    1. Lee Yeager Cain … I’m very apologetic for being so slow to respond. I believe I now have the tools to be more timely when I’m on the road. How is your son doing? did he have his first surgery yet? How old is he? Did you start the conversation with him yet? I’m betting he is very resilient. This trait seems to be common among the K-T Kids I’ve met.

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    2. How old is your son? Is he just now being diagnosed or something that was diagnosed at birth? I have a daughter with K-T and was diagnosed at birth. She is almost a year old-very resilient. Before she was 6 months old, she had been under anesthesia 4 times. The last time for 8.5 hours. It was a rough 3 days in the hospital, I won’t lie, but she started rebounding.
      I will never tell her she can’t do anything-as you said yourself. Our doctors at Cincinnati Children’s have said that she can do anything she wants. I will be thinking and praying for your son. I know the surgeries are tough and it’s hard seeing your children go through that.
      Thank you for sharing your story of your son. It’s hard feeling like a loner sometimes and no one to talk to about the symptoms and surgeries and visits to the doctors. It seems endless and no one that hasn’t been through it just doesn’t understand the emotional toll it can take.

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  7. I am 31 and i never been to a doctor about my “birthmark” Ill i know is that its a port wine stain. At least thats what my mom told me. But the older i get the more i have been looking into this. My birthmark goes from butt to toes, on my left leg and its about 2-4in bigger round maybe more i never checked, not only is it bigger but its hot to the touch, its so hot that i cant usually stay under the covers. but i cant even sleep on that side because it starts to hurt. when it is cold it turns to a dark purple. Could this be KT or does this sound just like a normal port wine stain. if there is anything anyone can tell me that would be great.
    Thank you

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    1. JM … The picture you paint sounds every bit like K-T Syndrome. In fact the largess of your affected leg is called hypertrophy and is one of the three indicators. I’m no doctor, but having seen many different topologies on affecte K-T Kids I would take the bet you have K-T. Would you be comfortable sending a picture? The heat you talk about is common. The sensitivity you describe is common.

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  8. i went to a Laser surgery place yesterday, and they had told me that the symptoms i am having sounds like it could be due to varicose veins, and there are a few i always thought it was part of the birthmark as long as i could remember they have been there. After seeing this website, i never had doubts. but now i just dont know, and every place i been to or asked about it all the people “oh no i never seen one that big before”

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    1. JM … The varicose veins go hat and hand with the vascular malformations that underlay K-T. Think of the port wine stain as indicative of capillary malformations. Think of the larger limb and varicose veins being indicative of vein malformations. In my case, my deep veins in my left leg are grossly incompetant and the right leg has no deep veins below the knee. My varicose superficial or peripheral veins are caused by these “garden hose” class veins doing the job of messed up or missing “fire hose” class veins. NOTE: Get to Boston Children’s Hospital, Cincinnati Children’s, or Mayo Clinic and avoid local vascular clinics. The key diagnostic tool in K-T are very complex and thorough venous system mappings done by specially trained radiologists. More later on this if you wish. Always ask the doctors how many K-T patients they have treated and how recently before taking their medical counsel. To do otherwise just seems like suicide to me.

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