Comments on: About http://carlasosenko.com The official site of writer Carla Sosenko Mon, 06 Feb 2012 02:19:50 +0000 hourly 1 http://wordpress.com/ By: Karen http://carlasosenko.com/about/#comment-1334 Wed, 24 Aug 2011 18:05:20 +0000 #comment-1334 Thank you Helen,

I wish you all the best too.

Take care,
Karen

]]> By: vangellekom@gmail.com http://carlasosenko.com/about/#comment-1332 Tue, 23 Aug 2011 05:17:31 +0000 #comment-1332 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)

]]> By: Helen http://carlasosenko.com/about/#comment-1331 Tue, 23 Aug 2011 00:51:49 +0000 #comment-1331 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

]]> By: Karen http://carlasosenko.com/about/#comment-1330 Mon, 22 Aug 2011 23:29:37 +0000 #comment-1330 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

]]> By: Karen http://carlasosenko.com/about/#comment-1319 Thu, 18 Aug 2011 16:37:50 +0000 #comment-1319 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.

]]> By: Leyla http://carlasosenko.com/about/#comment-1211 Sat, 18 Jun 2011 21:37:56 +0000 #comment-1211 long skirt or wide slacks.
Leyla from Turkey (Bursa)
I’m KT disease and 33 years old and same to you dear Carlo:(

]]> By: Jane http://carlasosenko.com/about/#comment-1171 Fri, 20 May 2011 15:09:45 +0000 #comment-1171 Jude,

What a fantastic reply! This hits the spot.

All the best.

]]> By: Samantha http://carlasosenko.com/about/#comment-1149 Fri, 06 May 2011 21:24:20 +0000 #comment-1149 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

]]> By: Samantha http://carlasosenko.com/about/#comment-1148 Fri, 06 May 2011 21:17:48 +0000 #comment-1148 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

]]> By: René http://carlasosenko.com/about/#comment-923 Thu, 27 Jan 2011 13:06:21 +0000 #comment-923 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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