Please keep writing your blog. I am a 23 yr old male that suffers from KTS in my left leg as well. Ive tried writing blogs before but i just never could word things right. After reading through your blog i was happy, happy that someone with a writing talent had KTS and could gett the word out there about it, because it is one of those invisable diseases that no one has heard of. I cant tell you how many doctors ive walked out on because they told me they dont know anything about the syndrome and they had to google it. -___- your blog has seriously hit everything ive been through. So keep it going.
Hello.I am a 23 old girl from germany. I was born with kts. It concerns my left arm, hand, leg and foot and a little bit of my right arm and hand . Your blog is really amazing. I admire your couarge and your way to deal with this disease. I wish I could deal with it this way. At the moment I am really depressed because of my kts. But that I had find your blog gives me a little bit hope to go on. Please keep on writing this blog. Your a wonderful person. ( I am sorry, my english is not sooo good ;) )
Hi Arianna, This is Mercy Kim, I totally agree with the other writers, you have a wonderful talent... perhaps you should consider being a writer as well as a psychologist...
I am trying to bring KT to the forefront of the medical community as well as the public. we are a minority but we do exist!
have you tried to send your comments to NORD and Lymphedema organizations? Have you ever thought about writing/publishing a book about your ordeal? how about a video on you tube? In the meantime, I truly admire you as a young woman, as a college student and as a KT fighter.
I have published a book myself about Meniere's disease, another rare inner ear illness that afflicts me, but lately i have been seized by excruciating pain in my KT leg. it turned out it is lymphedema. I am receiving therapy for it but I guess is a bit late. lack of information. I agree with anonymous comment... most doctors do not know an iota about this illness.. how sad and detrimental to all of us. I am one of your contacts on fb. i live in Miami, Fl.
I have two questions for you What is exactly debulking surgery and when is it used?
I wish I could display my blog the way you have yours, same layout. Fabulous concept to have your pages, labels and contact info so well organized.
Hi Ariana, My name is Stephanie Avila and I also have KTS, you don't know how happy I am to have found someone who understands and knows exactly what I'm going through. Reading your blog brought so much memories good and bad. I can't stop crying, your amazing. I would really like to get in touch with you. It would make my day to talk to someone like you who is so inspiring. Please read this. Currently I am trying to also find a better hospital. Shriners Hospital in Portland basically gaved up on me, its so frustrating. You are my role model Ariana :). Keep up the good work, from what I see you are one of the strongest girls ever!
I am 26 years old and have kts. Up till now I have refused to consider im different and that I may need help. After 11 years or since I was 15 I have had the same wound on my kts affected leg due to swelling. I have worked jobs through the wound as a guy doing everything literally under the sun until my leg could take no more or my wound would begin to bleed but never considered disability. As I have gotten older I have realized im not going to be able to work. I need to start my disability process but I am always overwhelmed by the paper work and medical records I cant seem to gather. I do not have a strong support system and im scared if I don't get help soon I may end up on the streets. Your success story has motivated me to start making moves to get this process started. Any advice will be greatly appreciated. We need to get this disease known so no one will question what it is and what we go through. We need to create a support system and your blog is amazing and will help many including me. nickyjohnson67@yahoo.com
Have not seen any posts on here lately I was wondering how you're doing with the medication they had put you on my daughter's 14 years old and she was born with kts the doctors are talking about putting her on this medication and I'm wondering if it helps in the long run I'm looking for something to help her feel better
Please keep writing your blog. I am a 23 yr old male that suffers from KTS in my left leg as well. Ive tried writing blogs before but i just never could word things right. After reading through your blog i was happy, happy that someone with a writing talent had KTS and could gett the word out there about it, because it is one of those invisable diseases that no one has heard of. I cant tell you how many doctors ive walked out on because they told me they dont know anything about the syndrome and they had to google it. -___- your blog has seriously hit everything ive been through. So keep it going.
ReplyDeleteHello.I am a 23 old girl from germany. I was born with kts. It concerns my left arm, hand, leg and foot and a little bit of my right arm and hand . Your blog is really amazing. I admire your couarge and your way to deal with this disease. I wish I could deal with it this way. At the moment I am really depressed because of my kts. But that I had find your blog gives me a little bit hope to go on. Please keep on writing this blog. Your a wonderful person. ( I am sorry, my english is not sooo good ;) )
ReplyDeleteHi Arianna,
ReplyDeleteThis is Mercy Kim,
I totally agree with the other writers, you have a wonderful talent... perhaps you should consider being a writer as well as a psychologist...
I am trying to bring KT to the forefront of the medical community as well as the public. we are a minority but we do exist!
have you tried to send your comments to NORD and Lymphedema organizations?
Have you ever thought about writing/publishing a book about your ordeal? how about a video on you tube?
In the meantime, I truly admire you as a young woman, as a college student and as a KT fighter.
I have published a book myself about Meniere's disease, another rare inner ear illness that afflicts me, but lately i have been seized by excruciating pain in my KT leg. it turned out it is lymphedema. I am receiving therapy for it but I guess is a bit late. lack of information.
I agree with anonymous comment... most doctors do not know an iota about this illness.. how sad and detrimental to all of us. I am one of your contacts on fb. i live in Miami, Fl.
I have two questions for you
What is exactly debulking surgery and when is it used?
I wish I could display my blog the way you have yours, same layout. Fabulous concept to have your pages, labels and contact info so well organized.
Thank you
Hi Ariana,
ReplyDeleteMy name is Stephanie Avila and I also have KTS, you don't know how happy I am to have found someone who understands and knows exactly what I'm going through. Reading your blog brought so much memories good and bad. I can't stop crying, your amazing. I would really like to get in touch with you. It would make my day to talk to someone like you who is so inspiring. Please read this. Currently I am trying to also find a better hospital. Shriners Hospital in Portland basically gaved up on me, its so frustrating. You are my role model Ariana :). Keep up the good work, from what I see you are one of the strongest girls ever!
Sorry my name would help. I'm Kerri Huff from Grand Junction Colorado. I have KTS in my right hand, arm, shoulder, & neck.
Deletehi
DeleteI have also kts in my left hand,arm ,back in the left side
my mail: kts.pini@gmail.com
I am 26 years old and have kts. Up till now I have refused to consider im different and that I may need help. After 11 years or since I was 15 I have had the same wound on my kts affected leg due to swelling. I have worked jobs through the wound as a guy doing everything literally under the sun until my leg could take no more or my wound would begin to bleed but never considered disability. As I have gotten older I have realized im not going to be able to work. I need to start my disability process but I am always overwhelmed by the paper work and medical records I cant seem to gather. I do not have a strong support system and im scared if I don't get help soon I may end up on the streets. Your success story has motivated me to start making moves to get this process started. Any advice will be greatly appreciated. We need to get this disease known so no one will question what it is and what we go through. We need to create a support system and your blog is amazing and will help many including me. nickyjohnson67@yahoo.com
ReplyDeleteHello nice to meet you! I have something similiral, keep trying!! and please open fb messages (if it 's possible)
ReplyDeleteHave not seen any posts on here lately I was wondering how you're doing with the medication they had put you on my daughter's 14 years old and she was born with kts the doctors are talking about putting her on this medication and I'm wondering if it helps in the long run I'm looking for something to help her feel better
ReplyDelete