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.

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.

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.

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

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!

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