Comments on: What the Guys I Date Don’t Know

By: Scott Spafford

Scott Spafford — Sat, 17 Sep 2011 11:06:50 +0000

Hi Carla,
I have K-T, didn’t realize it until recently. My leg is 25% covered by PWS and have varicose veins. And doctors are clueless. When I was 13, I was invited to the beach by a girl who insisted I wear jeans. The problem with being outwardly attractive is that a person draws the attention of otherwise shallow people and it can be difficult to spring the K-T secret on them. I have experienced at least a 4 in 5 rejection rate when I was dating because of the K-T. Thank you for drawing attention to our dilema.
Scott
Belvidere, Il

By: Jane

Jane — Sat, 21 May 2011 15:22:20 +0000

Great article, I can’t believe I only just saw it! Thanks for writing about KT. Like you, I am relatively mildly affected – it’s just a cosmetic issue (my left arm, hand, a bit of my upper left torso and the back of my neck/head . . . oh, the ‘meatballs’ – luckily disguised by my hair!). Most discussions on KT support groups about amputations, pain etc. do not apply to me. It’s good to get the perspective of someone for whom it is not so much a medical issue as a confidence one.

Anyway. I got excited to read your stuff. I have a few things to say, which have grown from my own experiences:

As a child, I didn’t think there was anything the matter at all really. My wise mother explained that in the playground, other children might ask about my arm, and I should show them, and say ‘it’s a birthmark’, which was always a successful technique and interest lasted, usually, about 15 seconds (I used to show it off as a bit of a party trick actually). Then teenager-dom happened, and I got all shy and horrified, hiding behind sweaters with long sleeves. But then, when I was 16, I started life modelling. It was a revelation! Prior to that I thought that boys would find me hideous (my left breast is quite squashed and lumpy). My dad (who is an artist) suggested the modelling, and I thought to myself . . . what’s the worst that can happen? Do it, so I did it. You should do it too! I went to a few classes myself, and modelled for about five years. Gradually, I realised that everyone is weird and lumpy and disgusting, and when 20 people are looking at your nooks and crannies trying to draw them, and not one of them is grimacing, or even looking surprised [turns out lots of them thought they were getting the perspective wrong when they tried to draw my arms!], well, it sweeps your fears away.

Subsequently I’ve slept with lots of men, and not a single one has been ‘put off’ [as far as I know]. Then I got married. He has a little paunch. He has a big appendix scar. He has a spotty bum. I have a lumpy back and head. And we are soul mates. And I find him sexy – warts and all – and he reciprocates. Of the people you like the most, do you like them because they are beautiful? (I hope not) Or do they become more beautiful, the more you like them . . .?

Nowadays (I am 29), I talk about KT and show people my ‘defects’ if it should come up in conversation, or if they ask. But, a bit like in the playground, the truth is that no-one is really all that interested. If we talk about it in the pub, the attention span is about two minutes, and I find I’m still enthusiastically discussing it while my audience has wandered off to change the tune on the jukebox. People are much, much more interested in themselves than in anyone else!

Finally, a little amusing tale . . .

I am lucky physically in other respects, I am 5’10″ tall and very slender with long slim legs. I also have nice thick hair, big blue eyes and a very large smile. I was shopping with a petite girl friend, who picked a stylish jacket from the rack for me to try on. I sighed and pointed out that it would never fit over my big arm. I tried it on, to demonstrate, and got my arm stuck in it. I required assistance to extricate myself. With her holding the jacket, and me bracing myself, we managed to peel it off again, as she laughed, and said “I always thought you looked like a model and could wear anything! We all have out own thing we can’t find clothes to fit (she has short legs, for example) . . . Yours is SO FUNNY! And I’m glad you’re not perfect!” And she was right. It is funny, so I laughed hysterically too.

All the best.

Jane

By: Daniela

Daniela — Tue, 18 May 2010 11:54:28 +0000

Hello, I too have a KTS. I have 26 years old and when I born I have this problem.
Is difficult for me don’t wear clothes like other girl. Sometimes I think that this is a horrible disease. But I have a good boyfriend that love me with my problem, you know my red leg and you accept this. I think is difficult for other person don’t watch my different leg but sometimes my friends tell me “It’s no much different”, but I know that is not the truth but I appreciate their loveable opinion.

Thanks to write this article, I’m happy to know that other person are in my situation.

A big hug to all. Sorry for my English, I’m Italian and I don’t write well on English.

By: Karen

Karen — Fri, 12 Mar 2010 19:11:08 +0000

I too was born with KTS- undiagnosed until age 19. I think your piece was wonderful. I had similar feelings to you when dating but I have grown to accept the body God gave me and I have a gorgeous husband, a job I love, a supportive family and wonderful friends—I sometimes forget I have the syndrome at all!!! I would encourage everyone with KTS to give themselves time and space to accept their own body and work through the negative feelings- especially during those body conscious teenage years.

By: Stacey

Stacey — Wed, 09 Sep 2009 19:07:28 +0000

I was diagnosed with Klippel-Trenaunay-Weber Syndrome when I was 11 months old. At that time there were only approximately 140 cases diagnosed in the world. I always thought I was the only one that had to go through this and of course no one else really understands what it’s like. My left leg is bigger than my right, my right arm is bigger than my left, my back is slightly curved to the left and I have many birth marks all over my body. As a child doctors would ask my parents to leave the room so they could ask if they were bruises and the nurse at school always thought I had scoliosis. Those are still questions I get asked today. My mom was at a doctors office and came across your article and couldn’t wait to show me. My dad read it and said, “Wow Stace I’m so glad you got over it.” He still doesn’t understand that everyday starts off with, “Where am I going today and what can I wear so no one stares?” Just like you wrote in your article, I am very lucky because it could absolutely be much worse. As a child the doctors didn’t think I’d be able to participate in sports and dancing and they recommended a back brace and potentially removing the growth plate from my leg. I was able to participate in all activities as i grew up with no barriers and I never needed the back brace or the surgery. Sneakers and pants got me through my childhood, although the kilt in private school did a disservice (boys are mean). But I have learned to be honest with my friends and even strangers in the community because the stares and the questions are just curiosity of something that is different. I never really “got over it” like my dad thought, because comments and stares still hurt, but I don’t like to live my life hidden every day. It’s a part of me and it always will be. I finally introduced myself to flip flops and capri pants about 2 years ago. Dresses and skirts have also become my friends (sometimes) I just want to Thank You for writing this article and showing me that I’m not the only one.

By: Maddy

Maddy — Wed, 12 Aug 2009 07:23:18 +0000

Hi Carla,
Like most of the people who have commented on this article, I too have KTS. Life with KTS definitely has its negative aspects and there are so little people who understand what you are going through which can make dating life completely backwards and solitary. As a 19 year old college student who has dealt with the fear of rejection from silly boys and the wonderful ability to hide myself from others with the blessing of pants, it makes life all the harder to raise my head high and let them know that I have this thing that makes me feel like a freak show. Although my KTS is on the very mild spectrum I’ve been receiving treatments which will make me feel “perfect.” Your article has filled me with hope that even laser treatments and schlerotherapy can not provide and I also hope that the treatments leave a little of my KTS behind because with out it I wouldn’t be the person I am today. I think you’re an amazing person who is beautiful inside and out.

By: S

Tue, 04 Aug 2009 02:50:39 +0000

Your article was so familiar. I too have KT and always try to hide the syndrome with clothes. The ‘realization’ moment eventually occurs and reactions have been crushing. Thanks for the article.

By: Shauna

Shauna — Sun, 19 Jul 2009 03:02:19 +0000

What a riveting piece! I admire your confidence and found it refreshing.

By: Robin

Robin — Sun, 12 Jul 2009 12:26:39 +0000

Hi Carla,

I don’t know if you remember me but I was friends with your friend Daniella in college and we’ve met before. I was just reading Marie Claire and realized that you were the girl whose article I was reading!

I think you are great and that it is a good decision to go public. You are probably going to help a lot of girls out there. Also, when we teens, we want to look just like everyone else. When you become an adult and have a career you love, great friends, a cool apartment, you realize that the shape of your body is not the most defining thing in your life.

It doesn’t matter if some guys don’t like you because there are lots of guys who would love to date you! I think you have come to the same place in your life as me, where you realize you are more than your condition and that you are worthy of love for all of your good qualities.

I would say, go date guys, get to know them. If you hook up with them and they don’t understand, then just explain it to them. When I read the article I was really happy for you because it sounds like you’ve found a level of self love and self acceptance that most girls could use! Can’t wait for your book to come out

By: Lisa

Lisa — Mon, 06 Jul 2009 14:11:50 +0000

I just wanted to let you now how much your article in Marie Claire resonated with me, and how much I appreciated it. Though I don’t have KT, the way you expained living with it and how it affects your dating life and relationships, I can totally relate. My very first boyfriend gave me Herpes when I was 18 years old, and for the past 15 years, I feel like I have been trying to “handle” it. What I mean is, explaining it to potential partners, dealing with the possible (and sometimes eventual) rejection, etc. I find too that when I first begin dating someone, and they are pretty much falling all over me, I hold back, because I am thinking in the back of mind…”wait til you hear about this…you’ll be changing your tune buddy.” So, I just want to say it was nice to hear other women are dealing with similar situations, despite very different circumstances.