[Sigh.]

20 May

I want to clarify, because friends–old and new alike–have been (very kindly) concerned: The term “potentially fatal disorder” has been thrown around a lot out there on the interweb today, and it’s important to say that while K-T (as far as I know) can be fatal in some cases, in mine it is not. (Knocking on wood and anything else within reach.) Nor is it progressive. (Again, this just goes for my case–I’m not an expert on K-T; I am an expert only on my own experience. And first and foremost, I am a writer!) It’s been jarring to read so many condolences about my health today. I am healthy, people! And I am incredibly grateful for this. As I say in my essay, I got off easy.

(*Addendum, one day later: When I talked to my mom today, I even asked her, just to be sure: “Um, Mom, I’m seeing a lot of “progressively worse” and “fatal” out there. What gives? That’s not me, right?” She assured me it’s not, that I had all the tests I guess K-T kids get when they’re little. So I’m learning a lot. Someone commented on the ABCNews.com page that he thought the description of the disease represented in the article was misleading, as he’s spent his entire life in pain. I felt bad about this–I hope it’s clear that I can only represent my own experience. As we can all see from everybody’s very generous sharing on this site over the past few days, everybody’s case is unique.)

That’s all. Just wanted to say I ain’t goin’ anywhere!

8 Responses to “[Sigh.]”

  1. Clare Fonda May 20, 2009 at 6:21 am #

    I am glad you will be around to write more brillaint articles

  2. Rob Kaufman May 20, 2009 at 7:51 am #

    I just wanted to thank you for writing “What Guys I Date Don’t Know”. I was born with Klippel-Feil Syndrome myself. I think I got off a bit easier than you did, my legs are virtually the same, my quirks are my left arm being much smaller than my right, being deaf in my left ear, and the eyesight in my left eye being worse among other things. The worst I dealth with was having vertebrae fused together when I was 11 and having to wear a full body cast and halo for almost a year. But I guess it is easier when you are born with a challenge than losing something you once had. Good luck with your future writing and good luck in finding someone worthy of what you have to offer.

    Take care,
    Rob Kaufman

  3. Larry May 20, 2009 at 1:10 pm #

    First off I am happy to hear that you aren’t going anywhere. Secondly, I saw your story as AOL Zones came up after I logged into AIM. I posted a comment there(that has yet to appear) but wanted a way to leave you a comment that had a higher chance of you reading it, even though I am sure you hear this all the time. You are a beautiful woman, and by that I mean not only the outside, which I am sure is, but the inside as well. You are an intelligent, strong, courageous woman and it sounds like you do have a sense of humor. Any guy would be lucky to be with you. I too know what its like to not get many second dates, though my problem I could more easily fix, being overweight. Not hugely overweight but still. Just remember for a relationship that lasts there has to be something more than just physical attraction anyways, in the end looks fade regardless of K-T. Like they say bf’s/gf’s come and go but friends are forever. Well since when did the word friend leave boyfriend or girlfriend. Look at it this way, K-T just helps you weed out the jerks a little quicker than most women get to.

  4. kohar boyadjian May 20, 2009 at 1:19 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.

    Kohar Boyadjian

  5. JT May 20, 2009 at 2:43 pm #

    Hi . . .

    It’s hard at times. I’m a 53 year old guy, and have K_T also. I’ve been through a number of relationships, short to long, and a marriage that failed. I’m very lucky to share my life with a special lady for almost seven years.
    We both are damaged in our own way, and lucky to have each other! It took me a couple of years to get “brave” again, after my divorce.
    The pain in my partners eyes, when seeing my pain, is the hardest to deal with.

    Keep smiling!

  6. kidish May 20, 2009 at 4:24 pm #

    As long as regional MRIs are run to determine where additional varicosities are located internally, KTS can be managed without much fear of termination. Should any extra varicose clusters rupture close to any vital internal organs, it can be bad, but not every person with KTS has them internally anyway.

  7. Nancy May 20, 2009 at 5:07 pm #

    I know what you mean by potentially fatal, but its true most people think it means terminally ill.

    You did not get off easy, but you are not dying, LOL. There is nothing easy about kt, even in mild situations like my daughters. Even when its just about how it looks, its not easy.

  8. Colleen Vincent May 20, 2009 at 7:01 pm #

    Thank you so much for sharing your story so that people will be aware of this syndrome. I have K-T on my left leg and I have bulging varicose veins all over that leg which are unsightly and embarrassing. I also can’t shave certain parts for fear of nicking a vein and bleeding profusely. So I have a lot of social anxiety related to it. Fortunately I have met and married a wonderful husband who loves me my personality and is attracted to me physically as well. The same thing will happen for you.

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