Comments for Such a Pretty Face

Comment on Hey look, I’m going to be speaking in Minnesota! by Drea eidsvold

Drea eidsvold — Mon, 06 Feb 2012 02:19:50 +0000

I am so sad to be just seeing this now. I would have loved to hear you speak. I have KTS and I am in Rochester now waiting for my appts this week with all of the various DRs. I always hide my legs and even though I love to workout I hide in the back row because I feel you can see the differences in my legs in my workout pants. I even wear cabana pants over my swimsuits:). I was on Rachel Ray for “I can’t stand my leg” episode and they taught me how to cover the port. Wine mark with make up but I want a solution to the veins, size, discomfort, port wine mark, and so on. Seems to just keep getting worse as a get older. People often disregard my insecurities and say you are beautiful and have a great body. I am so sick of feeling like a freak! It is great to hear that the laser surgery worked well for you. What kind of laser treatment was it?I have been looking into several options and hope to find some answers to a lot of my questions this week.

Comment on “It’s Complicated” With Facebook Status Updates by Adele

Adele — Wed, 14 Dec 2011 09:08:25 +0000

We need a lot more insigths like this!

Comment 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

Comment on About by Karen

Karen — Wed, 24 Aug 2011 18:05:20 +0000

Thank you Helen,

I wish you all the best too.

Take care,
Karen

Comment on About by vangellekom@gmail.com

vangellekom@gmail.com — Tue, 23 Aug 2011 05:17:31 +0000

On Facenook there are many American, Dutch en British pages about KTS.There you can learn more about the illness (wich isn’t really the correct name for it)

Comment on About by Helen

Helen — Tue, 23 Aug 2011 00:51:49 +0000

Hi Karen
Thank you so much for your email. I completely understand your thirst for knowledge about what you have just learned…I felt the exact same way. It seemed the more I read, the more lightbulbs went off which explained so many things I had wondered about and didn’t understand for my entire life. I felt frustrated that it took so long for someone to give it a name, but you waited even longer so I can understand that you might be even more “annoyed” (if that is the right word). I feel so grateful that, as you said, I am not alone; it really helps. I have found a new doctor who is wonderful and am getting better care than I have ever had. My legs (and now left arm too) are much much worse than they have ever been (age, life etc…) so it isn’t easy, but it is a gift to know what I am facing (and as you said, knowing how much worse it could be makes me count my blessings). Take good care and all the best to you in your journeys. Helen

Comment on About by Karen

Karen — Mon, 22 Aug 2011 23:29:37 +0000

Hello Helen,

I am 52 and just found out last week. I struggled for years trying to figure out why my left leg was different. I complained about my large knee and the inability to bend it like the other knee. I asked “why is this knee so hot”? I even had one doctor tell me the soft tissue growths on my leg were fat distribution. I get so angry thinking about all the time in the gym I spents on trying to reduce my so call “fat distribution”. I can’t belive more doctors are not aware of this syndrome.

How are you doing since your were diagnoised and can you offer any tips?
Karen

Comment on About by Karen

Karen — Thu, 18 Aug 2011 16:37:50 +0000

I am a 52 year old female living in a suburb outside of Los Angeles, California. My birthmark covers my left leg. My knee is larger and my leg has lumps that surround my kneecap. My knee is hot to the touch and most times the entire leg is heavy and painful.
I’ve been searching for answers to my condition all my life, finally last week, I was diagnosed with KTS. I have been on the internet researching my condition and was overwhelmed when I realized there were others like me and grateful because my condition could have been much worse.
I read your article on dating and tears rolled down my face as you described the same emotions I have dealt with in my dating years. I have found some peace since my diagnoses yet I feel the need to find others like me. Knowing I am not alone is of great comfort.

Comment on About by Leyla

Leyla — Sat, 18 Jun 2011 21:37:56 +0000

long skirt or wide slacks.
Leyla from Turkey (Bursa)
I’m KT disease and 33 years old and same to you dear Carlo:(

Comment on What the Guys I Date Don’t Know 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