About

bacchus-carla-41 Hi there. I’m a writer and editor living in Brooklyn, N.Y. My work has appeared in publications and on sites including Harper’s Bazaar, Cosmopolitan, Entertainment Weekly, Time Out New York, Refinery29, Jezebel, Marie Claire, xoJane, Self, The Hairpin and more. My first play, Headcase, was produced in the 2001 New York International Fringe Festival, and my short story “Clutter” was a semifinalist in the Nimrod Literary Awards. I can frequently be seen on national and local TV talking all things New York City and pop culture. I received my MFA in creative writing from Emerson College, and my BA in English and BS in Journalism from Boston University. I am formerly the executive editor of Entertainment Weekly, editor in chief of Time Out New York, and managing editor of Life & Style and InTouch. Thanks for stopping by. Follow me on Twitter and Instagram @carlasosenko.

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carolyn says:

May 19, 2009 at 10:58 am

Hi,
I just read your article from Marie Claire on AOL. I’m sitting here with tears streaming down my face. I don’t have any diseases but everything you said hit very close to home.
My body is covered in stretch marks and loose skin from 3 children and a massive weight gain during a miserable marriage. I’m free now, losing the weight and trying out this internet dating thing. The reveal is not something I’m looking forward to. I have a beautiful face, stunning eyes, a kind heart & a compassionate soul. I’m an intelligent, witty artist with so much to offer but scared to death. I think you just gave me some much needed courage. Thank you.

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Gina Monari says:

May 19, 2009 at 12:30 pm

I have a port-wine stain and was thrilled to see your article at AOL. Personally, I do not have KTS, but I do bleed a lot from the stain. Also, when I blush, my stain turns dark purple. Haha. But, dating, it is a challenge … but the ones that end up mattering always ask questions first…Here is my blog: http://bellalibera.blogspot.com/

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Max says:

May 19, 2009 at 12:49 pm

I was born with KT, too. The cavernous hemangiomas and lymphangiomas are all on my left side: leg, colon, etc. Big port wine hemangioma on my left thigh. A lot of surgery when I was a kid, and, recently, surgery to remove some of my gut.

However…

I am 53, married to a great girl, with two kids. So, as you say, things could be worse.

I read your Marie Claire piece on AOL. I haven’t had the strength to read the comments, but I hope they’re favorable.

Until I read your piece I hadn’t heard of anybody with KT–besides the golfer Casey Martin–who is dealing with it so nicely. You’ve made me very happy. Thanks.

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- Jeffrey Plas says:
  
  November 1, 2010 at 11:32 am
  
  Hi Max. I too was born with KT. Up until now I did not know of anyone with KT older than myself (42). There are more of us out there. We just need to find each other. Thank You for bringing yourself forward to be noticed. There are only a few of us with KT, but we’re proud and we’re strong!
  
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  - René says:
    
    January 27, 2011 at 9:06 am
    
    Hi there,
    
    I’am president of the Dutch Klippel Trenaunay Syndrome Foundation wicht was founded in 1986.
    Surfing around the internet, wich I often do to find more new info about KTS I saw de article in Marie Clair and the article by Carla Sosenko and I cam by a site from a 16 year old boy with severe KTS who had on National geographic channel a special about KTS. Perhaps it is something for you to watch. http://sites.google.com/site/mpolitzer/
    
    Greetings from The Netherlands
    
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Danielle says:

May 19, 2009 at 1:24 pm

Hi Carla,

I was truly touched by your story. It brought tears to my eyes. You seem like an amazing woman and deserve the same in a man. You will find him.

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Carlos says:

May 19, 2009 at 1:26 pm

Carla,

I was moved by your personal story on Klippel-Trenaunary Syndrome. I admire your strength and courage. I don’t believe that we should describe a condition of which we have no known cures (yet) as a “birth defect”. If that is the case than we should consider one being ignorant as a “birth defect” as well. Thank you so much for the inspiration.

Carlos

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Dan Johanson says:

May 19, 2009 at 1:44 pm

I read your story, about ‘first dates’, and your condition, (Condition? I dont want to sound, I dunno like a jerk, you do have a very pretty face and I’m sure the rest of you is beautiful too!
hi, I’m Dan

a smile to you ツ

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Laurie says:

May 19, 2009 at 1:58 pm

Dear Carla,

I never do this sort of thing, but here goes …
I just read your piece on AOL, and it was one of those rare moments, at least for me, when I found myself saying, “Wow, I really like the way this woman writes.” So, since I don’t “connect” very often to other people’s writing, nor to other writers, I figured I’d try to reach out, leave you a comment, a sincere, “yes, your writing touches my heart,” and just introduce myself and say, “hey.”
I am turning 49 on Saturday, live by myself in the woods way out in the middle of nowhere with a big old dog and lots of cats, I run my own small business (personal chef, healthful catering, and I teach and practice yoga) which manages to support me. I live simply, and I believe I have an important story to tell.
I’ve written on and off most of my life, have no writing degrees or formal training, but I have passion, and (as I get older) a clearer vision of the world around me, and although I’ve been blessed to experience those exquisite but infrequent moments while writing when I know, I just know that I have what it takes to tell a good story, I struggle a lot with doubt.
You see, I’ve taken quite a different path than most aspiring writers. Most of the time I even hesitate to call or consider myself a writer. In my mind, writers are disciplined souls, working every day, turning out page after page of manuscript. I haven’t worked on my book for months now, and today, all I want to do is get outside under the sun and work in my gardens.
I am very isolated, (pleasantly so) also happy and grateful I’ve managed to create this life for myself off the beaten path, off the 9 to 5 treadmill, where I have the time to pursue what’s important to me. I only get upset when distractions or my self-doubt and fear put a brake on my writing, and then I wonder and worry if I’ll ever finish my memoir. I do believe in it — it’s a great story, but … can I pull it off? And what’s stopping me? Lack of encouragement? No readers? No artistic or spiritual support? Fear of failure? Fear of success?
So … What’s your secret? What keeps you writing? Do you think all writers are different in the ways they approach their work? Do you think you have to write every day? Do you think MFA writing programs make you a better writer? Do you have to be a voracious reader to be a great writer? These are some of questions which give me pause, when, I guess the best thing to do is quit searching for answers, and just sit down and be with my writing in the quiet hours of morning. (Actually, it’s not so quiet these days as the birds are going nuts right before dawn.)
Anyway, I thank you for your indulgence. I honestly started this letter with the sincere desire to say I really enjoyed and connected with your voice in that piece I read this morning on AOL. The way you put words together conveyed deeply not only your artistic talent, but also your beautiful spirit.
Take care, and much Metta,
Laurie Jacobson

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margaret says:

May 19, 2009 at 3:42 pm

Hi! A friend of mine sent me a link of your article, which was very interesting. I too have KTS and it is something that often does scare people, not because it is scary, but because they don’t know much about it. I am fortunate to have a relatively mild case, so I was able to play lots of sports, but I always remember being afraid to change clothes in the locker room, worrying about college roommates, etc., so I certainly empathize with you. My experience though is this…even in the locker rooms of high school and junior high, where immaturity is often rampant, people who love and care for you for who you are will look past it. It certainly can be uncomfortable, but once you find the person who is meant to be with you they won’t see you for having KTS, they will see you for the person you are and will come not to even notice the KTS. I remember being worried about my “fatty tissue” on my side and it being apparent in dresses for prom and such…my mom always said, “you notice it more than anyone else,” and I think she is right. We do notice our own imperfections more than anyone else and the people who love us always notice them less–if at all.
Thank you for being so open about sharing your KTS experience with everyone. You have reminded me how lucky I am with my case too.

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- denise says:
  
  August 23, 2010 at 10:34 am
  
  Ladies, my 13 year old daughter has KTS and beautiful and pretty healthy. (She reminds me of Carla since she is already producing videos…) We are however facing some overwhelming emotional issues now that she is maturing and looks 18; especially her mom (me). I would LOVE to talk to you about growing up with this condition and what I can do as a mom to enhance and encourage. We are both self-diagnosed hypochondriacs so really have to limit our exposure to information about her condition. I havent even discussed talking with you to her, because I know it would make her fearful initially. She is, however; brilliant and always striving to be the best person she can be, so I bet if I spoke to her she would eventually consider it. PLEASE contact me. God Bless
  
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  - Jeffrey Plas says:
    
    November 1, 2010 at 11:44 am
    
    Hi Denise. I too have KTS. I am currently 42 and have lived with KTS all my life. I know your probably already doing this but the best thing you could possibly do for your daughter is be proud of her for who she is. Please tell her there are more of us out there and would love to support both you and her. Because of KTS, she will become a strong, independent woman with you as a great role model!
    
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Jeffrey says:

May 19, 2009 at 5:00 pm

At the young age of 13 and in the midst of junior high school, my somewhat shy daughter was diagnosed with a severe case of scoliosis (curvature of the spine) and was told by a back surgeon that she would need surgery if she did not go through a regimented change in her lifestyle by wearing a hard full torso brace 22 hours a day for many years. This brace was form fitted from right below her breasts to below her hips.

Since she was in sports, she was allowed to take off the brace during physical education. At first she as devastated with the thought of trying to hide her new “underwear”. We sat down and reasoned with her as to her choices…either spend the next few years trying to hide this at every waking moment and then deal with the uncomfortable and embarrassed feelings she would have one found out (and yes she would have be found out in the locker room the first day), or be completely open to everyone about her condition and even show off her brace so no one had the opportunity to ridicule her. This would also ferret out those that she would have no need to befriend and those who would stick by her.

She went into school the first day and made a huge spectacle of her brace…through four years of wearing the brace, not one person ever made fun of her and in fact she became one of the most popular girls in school. She went on to become the freshman homecoming queen, class president, and Miss Teen Ventura County and Miss Ventura County’s Outstanding Teen, competed in Miss California’s Teen. She never hid wearing the brace and was highly disappointed when she had to retire the brace.

She is a currently very vocal in advocating mandatory scoliosis detection in children at a much earlier age so other kids would have a better chance for a full rehabilitation from this. Unfortunately she was diagnosed too late for a full recovery, but she has improved substantially and is competing at state level pageants.

This experience was a tremendous boost to her confidence and at the age of 17 she is a very vocal spokesperson for many organizations and is involved in multiple volunteer organizations. She has accepted who she is and is not reserved about anything. This allows her to size up her friends (and boyfriends) before the size her up. She doesn’t hide anything and is quite comfortable in her own skin. I would recommend that anyone that does not have the perfect body learn to open up and live within your own means and not hide. To think that you can win someone over by hiding from them initially will only destroy a long term relationship….at some point you will be seen as distrusting. My daughter learned early in life (and also counsels other young children) how to be comfortable and confident…and not hide.

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Susan says:

May 19, 2009 at 5:01 pm

I too just read the article on AOL from Marie Clare. When you described your condition, you could have been describing my daughter’s best friend. She has KT and has been very scary sick a couple of times. This cute, fiesty little girl is almost 5 and already has been through a lot. I see her parents preparing to go to war with her KT as they gather and store all of her medical data on DVDs to send out to specialists around the country. I’m afraid her case may not be so mild. Her mom is a nurse and is looking to get and share information. Would you be open to being contacted by her and if so, how? Through your blog?

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- margaret says:
  
  May 20, 2009 at 1:33 am
  
  I know that I’m not Carla, but I’d be more than happy to do anything I can to help your friends. I have KTS and am in medical school. I’ve been able to get through any issues I’ve had because of great doctor-patient relationships, and although I’m not an MD yet, I’d love to give back in whatever way I can. Please let me know if I can be of help, and I’ll provide you with an email address.
  
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  - Max says:
    
    May 20, 2009 at 3:08 am
    
    Margaret: This is the first time I have ever communicated with anyone who has KT, or as I’ve called it all my life, “my disease.” It’s almost overwhelming.
    Susan: I agree with Margaret. If your friends need any advice or support, I’d be happy to help. By the time I was their daughter’s age I was the only kid I knew who had spent so much time in the hospital. I can be reached at rosenmax@aol.com
    Carla: I’m sorry to clutter up your site with another “disease support” message, but I hope you know how your article has affected those of us with KT. I’m dying to know how others have dealt with it. Please feel free to write, any of you. Thanks again, Carla.
    
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  - Susan says:
    
    May 20, 2009 at 3:08 am
    
    Hello Margaret! Thank you so much for your response. I would love to get your email address and pass it on to our friends. I know they are hungry for any and all information. Thank you, thank you!! I am at s.austin@sbcglobal.net. Please email me and I will connect you with this super nice family.
    
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  - Susan says:
    
    May 20, 2009 at 3:19 am
    
    Max: Thank you for offering to share your advice and support. Like you, my daughter’s friend has already been in the hospital a few times. The last stay was long and very scary for her family and their friends. I will pass your contact info along to them as well as Margaret’s. Thank you from the bottom of my heart and thank god for the Internet.
    
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  - margaret says:
    
    May 20, 2009 at 3:38 am
    
    Hi Max. I’m sorry for turning this into a forum on KTS, but like you, Max, I actually can’t recall meeting anyone else with KTS, even though I go to a Vascular Anomalies clinic. It is overwhelming, but we are out there and should be grateful to Carla for making this issue more public. Maybe more of us will find each other. Best wishes!
    
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points says:

May 19, 2009 at 5:33 pm

After reading your story my admiration for you knows no bounds. Women such as you are one in a million. Good luck.

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Steven Conklin says:

May 19, 2009 at 9:19 pm

I read your article and I need to make 2 comments. The first is that you have a great writing style. The second is that if you feel that your condition is a potential deal-breaker (though I don’t believe it is) I think you should have it known before a first date. It must be stressful to feel that you must hide something from a date and be worried about his eventual reaction. Though I realize it’s worse being that you live in NYC, I think it’s the best route. Then if someone wants to meet you, you can be yourself. From your writings I assume that you are as beautiful on the inside as you are on the outside. Be well.

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judefolly says:

May 20, 2009 at 12:00 am

ms. sosekno,

several years ago i dated someone who i would consider an amazing woman: pretty to look at, passionate, thoughtful, with an infectious laugh. our first date we went salsa dancing and just over the modest cut of her pullover’s collar i could glimpse the edges of a scar. somehow i entertained the possibility that the blemish would cover her far more significantly than her clothing revealed.

by the second date i gathered the courage to ask her about the scar. at the age of nine she attempted to remove a pot of boiling water from a stovetop, which she lost control of and endured a scalding over her breasts, midriff and back. later i had the privilege of seeing and touching her flesh, which she wore like a corset of melted wax. no matter how marred her flesh i would have never gathered the magnitude of the scar from her attitude: joyous and saying ‘yes’ to life always.

anyway, reading that you have begun to love your “lumps and bumps” assures me that others will, too.

respectfully,
jude folly

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- Jane says:
  
  May 20, 2011 at 11:09 am
  
  Jude,
  
  What a fantastic reply! This hits the spot.
  
  All the best.
  
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Nicole says:

May 20, 2009 at 1:14 am

Hi Carla, I’m in Shock!!
Just finished reading the Marie Claire article. I’m sitting in complete SHOCK because this is my life story. Ever since I can remember, my mom would always say, “You have such a pretty face.” Everyone always commented, but for some reason it did little to help the way I felt inside. When I was born 1973 they had no diagnoses. My whole life has been spent seeing doctor after doctor and being viewed as a specimen. Researched and written up in many, many medical journals, hospitals, operations…… it was never ending. Every time I went to the doctor I had to explain this long drawn out story of how I have no idea what this is, but please treat me. The frustration was OOC!!! Until, finally I met a Doctor in 2001at Montefiore Hospital. His name is Dr. Robert Marion. I was referred to him by an emergency room doctor at Cornell New York Hospital. This doctor had studied under Dr. Marion and recognized my condition. I wish I could remember his name to THANK him for my peace of mind. I would like to “Thank you” for writing about KTS and creating awareness…..If I can be of any support to you please do not hesitate to contact me. It would be a miracle to me, to actually talk to someone with the exact feelings/experiences as I had and still go through on a daily basis, professionally and personally.
On a positive note, I’m happily married to a very handsome, supportive, kind man and my KT did not affect him one bit. 🙂 But my potty mouth does!…..I cannot wait to read your memoirs.

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lisa in NYC says:

May 20, 2009 at 1:27 pm

hi there. wow. i don’t really even use AIM anymore but i am at work today and some of my top clients still use it so i log on from time to time to IM with agency clients (i am in advertising) and discuss new campaigns….point is, i think things happen for a reason because there it was sticking out on my AOL homepage, your article about dating. i have never heard of your disease. i think that’s the main problem #1 is that the visibility is so low that it’s important people like you who have it helps us in the dark about it be clearer on it. i agree with a comment of two i’ve read here that really it’s true, we all feel deformed on some leel i.e. we all have inadequacies, so it’s all about attitude. good for you getting your message out there. i too live in the NYC area and have my writing dreams. i say good for you.

just one questions….i’m kinda of frustrated because i don’t see any link or anything to click in anyway such as an RSS feed or someway to “sign up” for your blog and comments and thoughts and rantings etc…..I AM A FAN NOW SO HOW DO I KEEP CURRENT ON YOUR POSTINGS? inquiring minds wanna know. take care, best wishes….from NYC, Lisa Michelle J.

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kohar boyadjian says:

May 20, 2009 at 4:54 pm

It was so great reading your article and some of the comments. My daughter, Talin, has KT in her left leg as well as lymphatic malformations in her buttock and pelvic area. An article about Talin was published on the USA swiming website. You can read about her at the site below.
http://www.usaswimming.org/USASWeb/ViewNewsArticle.aspx?TabId=0&Alias=Rainbow&Lang=en-US&ItemId=1783&mid=3352
I would love to have you speak to her if possible.

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Tom says:

May 20, 2009 at 9:14 pm

Carla, I knew virtually nothing about K-T until I read your article. On the one hand I wish I had discovered your work earlier but on the other I am glad I discovered it through such a personal piece. Self-disclosure aside…an incredible bit of writing!

Do you read? Answer these comments? Or is this what they call blogging?….lol
Thanks….regards, Tom

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marie says:

May 21, 2009 at 12:32 am

For those interested in talking to others with KT, check out the KT support group at http://www.k-t.org/

This has been an invaluable resource to me!

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Ali says:

May 21, 2009 at 2:01 am

Hi there

I’m a 27 year old Australian woman with KT in my right leg.

Your story had a big impact on me. It has only been recently that I have started to become self conscious about my leg (I call him ‘Shrek-foot’) after a pool party, when a younger woman made some very unkind comments and told me that I was ‘lucky’ to have a fiance who was so understanding (I think he’s lucky to have me too!). Also, my leg has deteriorated lately and looks much worse than it did when I was younger.

I am able to cover my leg quite well, people don’t realise that I have KT as I usually wear long skirts or pants. I also wear giant black knee-high boots that I have custom made, so that I can wear shorter skirts as well. But recently I’ve felt as if I was hiding. I’ve been told that I have a pretty face, and I do get attention from men when I walk down the street. But I just think to myself that if they saw my leg, they wouldn’t think I was attractive anymore.

But I have a wonderful fiance, whom I love to pieces, and who massages my leg whenever I need him to and who sits with me in hospital every time I get a bout of cellulitis. He kisses my Shrek-foot and loves it to bits.

I know it sounds trite, but there are so many amazing people out there, people who won’t care about your KT and who will think you’re beautiful. I always think to myself, everyone finds someone. People who are far more disfigured than I am find someone to cherish them. One of the things that I have realised about my KT is that I sometimes don’t give enough credit to people and I expect the worst from them because of my own fears. And those people who will react poorly to my KT are not the sort of people I would want to be close to anyway.

I wanted to give you a hug when I read your article. I hope that all of the well-wishes you have received have made you feel good about yourself 🙂

Best wishes.

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Stephen Brand says:

May 21, 2009 at 7:23 am

Hello!! Until I read your Marie Claire story I also had never heard of K-T syndrome.
I don’t know what all you have been through in your life and know it doesn’t change things by telling you that you have to be okay with yourself as this is something everyone either at some point comes to terms with or struggles continuously.
I have heard that we have to love ourselves before anyone else can. Accepting how you look or feel is hard when there are differences that are more noticeable than someone else’s imperfections.
I have stuttered my whole life, going on 48, and my speech isn’t easy to hide once I struggle to say hello or what my name is. I learned to watch carefully for the expression of whom I am talking with. The more uncomfortable expressions I find the more I stutter from similar uncomfortableness. It’s refreshing when the person’s expression doesn’t!! In my case it becomes a cycle of discomfort. I have learned coping skills that help me most of the time. I have grown up with peers trying to be complimentary telling how much I accomplished in school as if something worse was wrong with me than difficulty in speaking. It always seemed strange to me when I was younger. Now I just expect similar reactions displaying the person’s discomfort. It’s easier to expect reaction and even push it as a wall than to risk opening up!!
I know people who due to cancer had disfiguring surgery to try to rid them of their illness. They were on one hand grateful to be rid of their cancer but horrid for their disfigurement. It’s almost like a double edged sword.
I enjoyed reading about some of your struggles. I know this story can’t even begin to touch the surface much less any deeper into what you have gone through and continue to experience. I don’t have any easy answers except to try and enjoy the ride along the road we call life. We all have our potholes and obstacles to maneuver through. I wish you lots of smooth roads ahead!!

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Bill Cagno says:

May 21, 2009 at 12:42 pm

Hi,

I read your article about dating on the Klippel Trenaunay Syndrome Support Group website. Very well written and I enjoyed your perspective. I will be 70 years old in September. Although I, like the rest of us, was born with KTS, did not get diagnosed until I was 57 years old. Even after being treated by many medical people for several years. Even with classic symptoms. Also, I am probably the only other golfer with KTS in the world, like Casey Martin. To my knowledge, I seem to be the oldest KT’er. I have Port Wine Stain covering my right foot and going up the outside of my right leg, to the buttocks and up to the middle of the small of my back. Fortunately, it is not visible to anyone when I am dressed.
I can honestly say that I have only had a very small amount of comment about my body, even from peers, as a child. Also, it really never stopped my progress in dating. And, believe me, I dated many girls in my younger days. My symptoms in the early years were subtle and I just never understood why, for instance, the right leg was a bit larger than the left. Or, why my right leg would cramp after rigorous exercise. Or, why my right foot would freeze up so easily. I played most sports, did three years in the US Army and played baseball and softball almost until I was 50. Never knowing what was in store for me. There is much to write about, and I don’t want to over- whelm you, but if you are interested in my knowledge, please write to me and let me know. One last thing. You are a very good looking woman and you will absolutely meet men whom are going to love you no matter what! Any man who does not see through your physical differences is not worthy of your company. My wife married a guy with a birthmark and she stayed married to a guy with Klippel Trenaunay Syndrome. Thanks.

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laurie says:

June 10, 2009 at 10:19 pm

Carla, read your story and just had to comment. 10 years ago, at the age of 43, I became deadly ill with a strep infection, lapsing in to a coma. End result: amputation of both legs below the knee, and amputation of almost all my fingers. What initially seemed to be traumatic beyond belief turned out to be quite a different reality. I was sure no man would ever love me (my husband divorced me while I was rehabilitating) again, I was pleasantly surprised to find out differently. I have been in two long term relationships that ended for various reasons, but having nothing to do with my disability. I have met and dated many men, and NOT ONE has had a problem when I told them about myself. Yes, it is difficult finding the right time to tell someone about being an amputee. There is always a fear of rejection. But I have discovered that men seem to be attracted to the strength I have in accepting and dealing with the hand I have been dealt. I am strong, self-sufficient, and far from needy. You sound as though you are the same. The first man I dated after my illness was 17 years younger than me. Flattering, yes. But more than that, it made me realize that I should never underestimate myself. And what he told me has stayed with me all these years: “Use your disability as a bullshit filter. If a guy won’t date you for that reason, then you probably wouldn’t want to date him in any circumstance” And he has been right. There are wonderful men out there who will love you for who you are, and never look at or care about anything else.
Just wanted to let you know you’re not alone. I am dating a wonderful man right now who absolutely worships the ground I walk on. You go girl………….you can do it too!

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Michael Politzer says:

June 22, 2009 at 2:01 pm

Hi Carla,
My name is Michael Politzer, and I also have KT! I have a website: mpolitzer.googlepages.com, and I would love for you to check it out! I am going to be on Science of Extraordinary Humans on National Geographic sometime this fall! I have one of the most complex cases of KT on record. I am turning 16 this Saturday, and I would love to talk with you, and be able to contact you via email!

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daniel says:

June 28, 2009 at 11:57 pm

Hi, I read your article which was well written but I also got the impression that you are the superficial person you’ve come to dislike. I think you have the same high standards as anybody else who has a pretty face and the “sexy” body to go along with it. I am positive you have been asked out by guys you didn’t think were hot whom you rejected based on that alone.

I mean I understand it can’t be a cakewalk having been born with this condition but I also think you should look in the mirror.

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Ellen says:

July 9, 2009 at 4:10 pm

I am so glad that I found this site. I, too, read with interest your article in Marie Claire, as my youngest daughter was diagnosed with KT shortly after she was born. She will be 1 in early August. I’ll tell you that it was tough for me to read, thinking of the difficulties my daughter may endure as she grows. So much is unknown.

My first thought after reading the piece was “I wonder if I could get in touch with Ms. Sosenko?” – then thought that she likely does not want to become the KT Poster Child… But Carla, if you do, indeed want to be, please see my e-mail below! My husband wondered what I would ask you, and my biggest question would be how to best support my daughter as she grows.

As I googled your name, I saw follow up pieces to your article -I’m so glad so many acknowledged your excellent writing, but I was surprised to see your article treated like some big reveal – a dark, dirty secret finally brought to life. Maybe that’s just my impression. Also read of KT as life-threatening, and that threw me a bit?

From the beginning I have tried to learn as much as I can about this syndrome. Despite excellent care from physicians here in NY at Columbia, I still feel like I have so many unanswered questions. If any of the posters would be willing to share their experience or knowledge, I would so appreciate it. You could e-mail me at eljdon1970@yahoo.com.

Good luck to you Carla, and thank you for writing this article.

PS – My husband also read the article and said you’re a hottie!

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- Samantha says:
  
  May 6, 2011 at 5:24 pm
  
  Ellen
  
  I saw your comment to Carla and I had to say that as a young woman I know what it was like to go through growing up with KT. If you want to know from my perspective please do not hesitate to contact me on sam_hadland@hotmail.com
  
  Samantha
  
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harris says:

July 18, 2009 at 9:21 pm

Carla,

You know, like others I read your piece on my yahoo home page–damn dating advice/whatevers always get me, despite the fact that I have yet to read something that has either enlightened me or made dating easier. In fact a lot of what I read scares the crap out of me. Scared is probably the wrong word… Well, it’s something to do with my little bubble and reading stuff that makes me wonder if the person standing next to me is as freakishly self absorbed “peanut butter eaters (okie for worthless person)” as some of the advice authors. Do people really date, date, date their lives away? Anyway…
So you have a bump on your back? That is kinda strange. I had neural blastoma (cancer) when I was a babe, and the operation/radiation treatments left me with two possible characteristics. 1st: my left eye is slightly smaller, the pupil never dialates, and the the lid is slightly relaxed. My neck which is deer-like, shifts slightly to the left, my beard doesn’t quite come in on the left, my hair is a little different on the left, my … Man there are a lot of problems there. The funny thing is that none of the women I’ve been involved with noticed for several weeks, which makes me wonder, “how much do people really look at each other, even when interested?” Honestly, I don’t think that people really study the canvas, but the do tend to be drawn towards or away from the combo of colors, which has much to do with many factors, including of course how well someone looks from a glance. 2nd characteristic… I grew up feeling different, and had the whole I might die thing to deal with (remission), and I think it might have made me extremely independent.
Independence… God what I’d do for “the one.” I’m not content with being independent; I am kinda proud of it, but I’m definitely not content. And I’m 40–been doing it a long, long time. So I have two strokes against me; I can live without near perfection, and then I’m also hardly perfect. Damn, what a quandary. A so I go on, both not meeting the ones who will have me, and waiting to meet the one who won’t. It kinda sounds like your deal. Bummer.

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Ryan G. says:

July 18, 2009 at 10:45 pm

Dear Carla…

I read your article a few months ago, and then came back across it just recently and was thoroughly moved again. I do not have KTS. However, I feel as though I can relate to you and many other readers who have left their mark on this page regarding the fact that “different” makes people “indifferent” towards you. I have a blood red Portwine Stain (birthmark) covering the entire left side of my face. It stretches from my ear lobe, across my left cheek and wraps around the front of my chin. To make matters worse, I went round after round with laser treatments to try and lighten it as a kid at Childrens Memorial Hospital in Chicago Illinois where I live. What I mean by worse is that the laser treatment broke up the pigmentation in some spots, and it did lighten the stain a little bit, but it left the left side of my lower lip rediculously swollen where the laser had penetrated the lip. As I have aged(now 26), my lip has darkened in color and has increasing scar tissue growth and continues to grow on a yearly basis. I am at the point where it looks like I took a left hook to the mouth in a bar fight! Everyday, I have people commenting and asking what happened. Its withers away at my self-esteem and sometimes it really takes a toll on me. So not only does the birthmark standout, but the lip is just about swallowing my face and that was a by-product of trying to fix the birthmark to begin with. As I have read, many readers have tried to hide their KTS and feared what the typical reactions would be if people did notice it. I too have played “hide and seek”. I am a 26 year old male, and I dont hesitate to apply foundation makeup that matches my skin tone, just to hide my portwine birthmark. I dont believe that anyone in this world wants to look “different”. Especially when sex sells, and the first thing people seem to notice is your face. I am Italian and Irish and I too have been told that I handsome on occasion…..but if people only knew I was hiding that birthmark, what would they really think? I have struggled with this for years. Lately, my beard has grown in thicker and darker and I have grown it enough to hide some of the birthmark, but its still pretty prevalent when you take a close look. It was refreshing to read your website and see that others feel the same anxiety that I have felt over the years. While my situation is not nearly as severe as KTS, its still a situation that bothers me each and everyday. Imagine waking up and looking in the mirror and seeing a giant fat lip and a bright red birthmark EVERYDAY. That is my living hell. Your story moved me incredibly. While we are all made in the image of god, some of us have complications that make life a little harder to deal with. People fear whats different in life, thats only natural. I just wanted to say thank you for your story and that any man would be blessed to have a woman with a heart like yours no matter what you look like on the outside. God Bless and if you have any encouraging words or advice, please dont hesitate to write me. Have a great weekend.

Sincerely- Ryan

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Dianna says:

July 19, 2009 at 4:26 am

Just read your Marie Claire article. I never heard of KT before, thank you for sharing your story. I know you will find “the one” some day. I love your writing style, can’t wait for your memoir! Keep it up!

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JP says:

August 10, 2009 at 4:41 pm

Hello Carla,

Well, I guess I was one of those anonymous JDATERS, as I recognized your photos from there. We never met, but I wouldn’t have turned you away because of KTS. I saw you on one of our mutual friends Facebook profiles, and thought I’d write. I’m 40 and just got married. My wife is 41 and with her looks, could have been married 100x over. The point is – looks are only the starting point. That’s only the front door. Once you come inside the house (pun not intended), and learn about a woman’s soul, brain, heart and mind, that’s where the magic happens. I read your article and admire the courage it took to write it. But you don’t have to be a brain surgeon to see that real confidence overshadows any physical liability. You should know this. I’m sure you like the person you are. And I’m sure someone else will too. And for anyone who doesn’t, they don’t deserve you. Your attitude has more to do with you being attractive than anything else – KTS or not. That’s what will help you find “the one”.

Best – JP

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Nick says:

August 17, 2009 at 4:00 pm

Through the beauty of web randomness I came across “What the Guys I Date Don’t Know,” loved it and ended up here, with the cursor blinking in the comment box.

What do I want to say? I decide to scroll up and go through some of the comments, but quickly realize that my motives for wanting to leave a note must be different.

I wasn’t moved by the article and it would be arrogant of me to say I can relate. I found it refreshing and it made me smile, but I wouldn’t feel the desire to comment just for that.

I have to admit that what I felt was attraction to the persona that jumps out of the page. The article is a fantastic dating profile lol… I’d ask you out but we are separated by an ocean and you’d probably turn me down 🙂

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roxanna says:

August 20, 2009 at 10:09 pm

I just read the article in marie claire titled “what the guys i date dont know” and am in tears. Last year I was in an accident that left me with a severe case of drop foot. Basically my right leg is paralyzed from my knee down. I have no control in it whatsoever, the sensory nerve was torn in half so even the slight pressure of my jeans rubbing against it can be very painful. i walk with the help of a well hidden AFO brace (which is painful to put on), without it walking not only looks funny but is painful as well. so much in my life has changed since my accident it took alot for me to attempt a normal social life as a 26 year old woman. for example, a few months back i went to the beach with bunch of friends and due to my drop foot, i had no stability walking in the sand i fell on my face in front of everyone just getting out of the car. reading your article reminded me I am the carrier of my disability, IT does not control ME unless i let it. its so refreshing to read another womans story who knows what its like not being 100% physically “normal”. thank you so much for the stregnth you had in even writing it, it was an inspiration for me- which i have needed for a very long time.

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Jim says:

August 21, 2009 at 1:02 am

Carla,
I read your article in Marie Claire. I had never heard of your condition before and after reading the article, I can understand your feelings regarding your physical appearance.
One thought to consider is that your face IS extremely beautiful, not open for debate, and as such you will intimidate some men. I’m a nice looking guy but I wouldn’t even try to approach you. Sadly, I wouldn’t get a chance to meet you because I wouldn’t feel that I would stand a chance.

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Joe says:

August 21, 2009 at 3:26 am

I just read your article on Yahoo! about what guys don’t know about you…what a load of crap. You have too many silly, neurotic rules about dating guys. This is why American men are going overseas. We want women that are simple and sexy, not complicated and over thinking every stupid little thing. Good luck

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Gogue says:

August 24, 2009 at 2:24 pm

Hola Carla,
I am Gogue. Do you remember our collaboration in th New York Moves Magazine?
Continuous publishing Carlotta Cohen?
Regards
Gogue

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Melissa says:

September 30, 2009 at 2:26 pm

Hi Carla,

I came across your articles and I definitely know what you are talking about. I have had this condition since birth and at times I just hate it. I too have a ‘mild’ version of KT with my biggest issue is not being to wear cute, sexy shoes or boots because my affected leg has an inflexible ankle.

As I am now 28, I have mastered the art of strategically hiding my flaws. I have never worn a knee length summer dress and I only wear short skirts with thigh high boots (if they fit) in the winter. I have friends for years who do not even know that I have this condition & I don’t think I’ll tell them anytime soon. Some days I forget that I have this conditions, and truth be told, other times I am bitter about it.

I just wanted to say that I loved your article because I see your story in my life. I’m anxiously awaiting your memoirs.

Cheers
M

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Julie Martin says:

December 7, 2009 at 4:45 pm

Hi Carla,

Do you hold the copyright for:
Carla Sosenko, “What the Guys I Date Don’t Know,” in Marie Claire, May, 2009.

I have been trying to submit a reprint permission request, but have not received a response. If you could please contact me I would appreciate it.

Thanks so much!

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Karen Snowdy says:

January 19, 2010 at 3:25 pm

Carla,

Thank you for writing your article about KT. My 8 year old daughter has a mild to severe case of KT, which sounds alot like yours. You are very beautiful and I can only hope my daughter can grow up to be as strong, intelligent, and confident as you. I only know what is like to be a KT-parent. I have not walked in your shoes, nor my daughters. I can’t even imagine.

I would love to hear from you.

Karen
karensnowdy@yahoo.com

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Jim says:

April 6, 2010 at 3:23 am

Hi Carla,
I understand how you feel because I have an issue with my self image that has affected me throughout my life. I apologize to all those who might be interested in what it is but I will only share my feelings with Carla.

I hope you can trust a man at some point in your dating and have true happiness. I know that dating is a numbers game in the best of circumstances.

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Jeff says:

May 4, 2010 at 12:46 pm

Carla,

I am currently involved in putting together an event to benefit a seven year old girl with KTS. So far she has had eight surgeries with three more scheduled for this Summer. Also, the surgeries and doctors are located in Boston and New York City and the family is in Florida so there is a significant travel cost as well. We are putting together a daddy-daughter function to raise money for the upcoming surgeries and, the primary fund raising will be done through a silent auction held on June 10th. And, while I’m certain that you have circles of influence through your connections as a successful writer to bring in donations of both money and items for the auction, all that I’m asking of you is that you take a moment to write a letter of encouragement to this seven year old girl as she continually faces new battles every day. It is impossible for anyone to genuinely relate to what she is going through unless they, themselves, have experienced it. Thank you for your time and I look forward to hearing from you soon.

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Alva Buendia says:

May 22, 2010 at 7:25 pm

I find this article very helpful. It tells all the things that you need to know and what you need to do. Thanks a lot for sharing your knowledge to us.

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erin says:

June 30, 2010 at 9:56 am

Hi Carla,

I too have KTS and was pleased to see you write about it.
I’ve faced some really tough times with my KTS. Being sick and folks not understanding because I “look fine” to them and have a pretty face. I’m going through a very hard time right now- and I am, as you must be with KTS, a tough girl.
I’ve spent a great deal of my adult life working to make life for those with KTS better. Recently I’ve discovered a potential solution for the tachycardia that comes along with KTS in many women. I will be writing it up with Dr. Giannoula Klement at Tufts. I can be reached @ erinrosas@gmail.com or (352)812-5036.

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Helen says:

December 10, 2010 at 9:25 pm

I found out yesterday, after so many many years of wondering what was “wrong” with me, that I too have KTS (I am 45). It has left me feeling very confused, both relieved to finally have a name for my condition, and sad because now I know there is nothing that can be done to make it better. Finding this site, and reading other comments, it is such a relief to know there are other people out there like me. All these years I have felt so alone, desperately trying to “hide my secret” from others. What a gift to be able to read about other people coping with this same syndrome! Thank you Carla for bringing awareness to KTS. I cannot wait for your Memoire to be finished!

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- Karen says:
  
  August 22, 2011 at 7:29 pm
  
  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
  
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Katie says:

January 27, 2011 at 12:03 am

Thank you Carla.

I just read your story in Marie Clare, and It made me feel less alone. I am 22 and have KTS and until I read your article, I did not know anyone else with the condition. Mine is similar to yours, running the length of my left leg and making it about twice the size of the other leg. My KTS also goes up into my left side, and I have lost my spleen because of it.

i just want to thank you for coming out about your KTS and the hardships it has caused you. I also tend to shy away from guys, fearing they will only hurt me if they see that my lower body is far from normal. Can i ask you how you stay so strong? Sometimes it is completely overwhelming for me, and just knowing that someone else out there has the same condition is very helpful.

thank you for sharing your story, and I will be looking forward to your memoir!

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- Mo says:
  
  March 12, 2013 at 2:31 pm
  
  Katie:
  
  I have a similar condition and also lost my spleen. I didn’t think it would be related to my condition. Did they tell you how removing your spleen was related to your condition?
  
  Thanks
  
  Mo
  
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Samantha says:

May 6, 2011 at 5:17 pm

Carla

I had to write to you after finding your story. I was diagnosed last year with KT after not knowing for 28 years. Like you I have a great job, excellent social circles but something sometimes holds me back. I have had long term relationships which have survived the KT if not the people in it but I have been single for 2 years now and am really lacking the confidence to get back out there and put myself under the spotlight. I do have one question for you….how do you manage dressing for summer?

Sam x

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Leyla says:

June 18, 2011 at 5:37 pm

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

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Karen says:

August 18, 2011 at 12:37 pm

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.

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- Helen says:
  
  August 22, 2011 at 8:51 pm
  
  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
  
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vangellekom@gmail.com says:

August 23, 2011 at 1:17 am

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)

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Karen says:

August 24, 2011 at 2:05 pm

Thank you Helen,

I wish you all the best too.

Take care,
Karen

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Susana says:

May 8, 2013 at 11:15 am

Hi Carla,

My name is Susana and I am like you.

Im from Barcelona, 33 years old and I have PhD on biology. I have a writer web too, but on science.

I have KT on my right leg… Less thin than the other, with a “meat ball” on the thigh and lot of green varicous veins.

You are the first person with KT I “know”. And when i saw your face (very similar to mine) and read your article I saw my live reflected on yours.

Big Hug!

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Renee Carbonaro says:

October 25, 2017 at 10:38 pm

I just read your take on tonight’s Real Housewives of NJ. You are brilliant, witty subperbly entertaining to read. You have found your calling like no other.

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Sam says:

December 2, 2020 at 11:39 am

Hey! My name’s Sam I’m 19 and I also have KTS. I’ve read your article in Marie Claire. It’s the first time I’ve ever “heard” or “seen” another person with KT whose thoughts and feelings mirrored my own. (Although I know of others such as Arianna Faro & Berlange Presilus). Your Article really hit close and reached out to me. It gives me comfort as well as a reminder that I’m not alone in my experiences as someone with KT.
——Cheers to being the lucky 1s out of 100,000

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