Klippel-Trenaunay-Weber syndrome (KTWS) left leg 34 year old male

Mike and I wanted to post this video to help explain to our friends what he is dealing with. He decided that he can cope with the embarrassment he has about what it looks like so that people can kind of understand now why he can't work and is in pain all the time. There are less than 2000 people that have this in the entire US (I was told) and I'm sure most of those people are too shy to show themselves so maybe this video can help educate people- so please share! Klippel-Trenaunay-Weber syndrome (KTWS) is characterized by a triad of port-wine stain, varicose veins, and bony and soft tissue hypertrophy involving an extremity. (his left leg) There is no cure for KTWS. Treatment is symptomatic. Laser surgery can diminish or erase some skin lesions. Surgery may correct discrepancies in limb size, but orthopedic devices may be more appropriate. KTWS is a progressive and painful disorder and complications may be life-threatening.

Category:

Education

Tags:

• Klippel-Trenaunay-Weber
• syndrome
• (KTWS)
• Vascular
• anomaly
• left
• leg
• 34
• year
• old
• male
• Mike
• Gregg
• painful
• varicose
• veins
• delaware
• rare
• disorder
• port-wine
• birthmark
• stain
• bony
• and
• soft
• tissue
• hypertrophy
• malformation

[214swat]

i have ktws in my right leg and was wondering if your leg has always been that bad or if it got worst as u got older.

[AliDupri]

@214swat It has gotten much worse over the years unfortunately.

[pris72]

Hi. I have KT. My right side if my affected side.I am having issues right now with neuropathy, dizziness and vertigo. My neurologist is putting me through every test under the sun trying to figure out if I also have something auto immune going on. It has been a rough ride with the leg pain growing up, but I think we with KT just learn to put a smile on our faces even through the pain. I may do a KT vid soon.

[AliDupri]

@pris72 Did they find anything? Does your leg bleed? I'm sure if it does they probably checked your blood levels....

[pris72]

@AliDupri I still have no concrete answer. My legs only bleed if say I cut them when shaving, but it's not the way a normal person would bleed for a minute or so and stop. I am a heavy bleeder. I almost bled to death in 1990, which resulted in me receiving 6 blood transfusions. I have had chronic issues with blood in my urine, yet no sign of infection for many years. My urologist has never said if he thinks it is KT related. So many Dr's here know nothing about it sadly.

[AliDupri]

@pris72 that's terrible. If you are on facebook I would suggest joining the KTWS support group, everyone is great on there, you can ask them anything :)

[ricojd001]

The approach that is being taken through reflexology is slightly altered due to the peculiarity of the case. Very delicate pressure and at specific points together with an adapted version of the spiral tape method. This is being done in São Paulo, Brazil, myself being the patient.

[ricojd001]

First thing to make things easier is to accept you have it. Born different, your life will always be different, yet can be great!!! So a great way to deal with the matter is to seek phsycological and spiritual help to try to understand what is probably an issue: why I was born different from all my friends (parents, please start dealing with this at early ages for your kid's benefit!!!)? This was of great help. More recently we have been testing with podal reflexology. Interesting results!

[MrLoubags]

ive got kt dwn my left leg but isnt as severe

[scottarring]

Thanks for posting the video. I have KTS in my left leg as well and I am a 33 year old male.  My leg is remarkably similar to yours. Do you have any particular methods for coping with the pain? Do you wear a compression stocking? I am just curious because I have also had bouts with some of the issues you describe. If you would like to contact me outside youtube my personal email address is scottarring@aol.com Thanks!

[trusimsangel]

I have KTWS... my entire left arm, chest, and back, part of my right leg, and other various "patches" on my body. My left arm is smooth, without bumps, but it is easily 2-3 times and several inches longer than my right arm. I've began to have pain in 2010 (numbness, tingling, burning, or "pinching" feelings in my arm), and I'm only know becoming aware of what my "birthmark" is, and what may be in the future.

[mrsfrd]

Thank you for sharing your KT. I'm mom to a wonderful 11yr old girl with full-body KT.

[PicfarlandProduction]

Watchingthis video totally makes me wanna cry. I have ktws and I'm 15 at the moment, but the worst part is it's already got me worse then you. I feel for you so much because Idk how I'm gonna make it to be your age with this disease tbh. Everyday is harder and I can't walk and everyday is just filled with pain and in 15 years I'll be having surgery number 11, may not seem much from a 15 year old but I really, really, really feel for you. :(