Does anyone still get on this site? I'm a mommy to a daughter with KTS and want to get more information about what to expect or find another parent to connect with.

Hi my name is Patty. I have KTS. It affects my entire left leg and foot. I am 52 and maybe I could answer some of your questions.

Hi Patty, Thank you for your response! My daughter has the same as you. Left leg and left foot. Some up under left butt cheek. She is only 8 months old, but as a parent, this diagnosis is frightening since not much is known about it. I'm not sure exactly what to expect, or if things can be expected. We have seen a Hematologist at the Children's Hospital a few times already and will continue to see him throughout her adolescence to stay on top of any impending effects from KTS. Would you mind letting me know about how it has affected you, or if you know of others who have the same diagnosis. The hardest part for me right now is not having a community of parents/kiddos who are suffering as well so I feel very alone. Any advice, support, or anything you can give me would be greatly appreciated. I am grateful for your response on this site. I'm just not sure where else to go to find relevant information from sources.

My mom and dad were told I had a "birthmark." I never had problems until I was beginning to walk and would have lots of pain to the left foot. Pain so severe I would limp. Mom brought me in and the pediatrician said the birthmark was a "hemangioma." I continued to develop and grow. Pain was severe at times to the point I would have to limit my ambulating. When I started puberty pain was more frequent and would always be worse before my period. I had very irregular periods 2-3 a year and developed increased facial hair. Mom brought me to her gynecologist who wS aware of my "hemangioma." He put me on Premarin and progesterone. This regulated my periods but I developed phlebitis in the L calf when I was 16. Doc took me off and I continued with irregular periods. When I was 24 I had severe L calf and foot pain. Was referred by primary care doc to a new vascular surgeon in town. This was the first time I was actually told that I had KTS. He did vascular studies of the L leg and was unable to detect blood clot. He became my provider for my KTS. He had me take daily Aspirin and prescribed a compression sock. He also suggested elevating the L foot above my heart several times a day. I continued with the activities above except for the aspirin, and had 3 children and only suffered periodic pain to l foot. When I was 35 woke up with severe pain in L foot. Couldn't even bare weight. Saw my doc and had Doppler that detected a blood clot at the base of the 2nd toe on my L foot and one on the sole of my foot. Odd area to get clots. Pain was so severe I was admitted and doctor surgically removed the clot at base of toe. He left the one on the bottom of the foot. I was heparanized then started on warfarin. I was changed to daily Aspirin and have not had any further issues with phlebitis or clots. I do wear the compression sock and take Aspirin. Doctor stressed importance of keeping the foot protected(no bare feet d/t concerns of cuts and bleeding because of the vascularity of the foot There were no support groups around. I did read about a support group in Minnesota but did not get involved. I have had issues with supraventricular tachycardia. Not sure if there was correlation with that and KTS. I believe there was a study being done regarding that. I live in Green Bay, WI and if you ever want to talk you could email me. Pfarley@new.rr.com and I can send my phone number. I just learned to live with the KTS, but it was embarrassing and kids/adults would freak out when they saw it. Needless to say I did not like swimming because my foot and leg would be visible for all to see. I do not know anyone else with this.

I found the website for support group it's www.k-t.org also Erin Rosas is a KT Advocate. She has a website. I just googled her name and kt advocate. I spoke with her a few years ago when I was having the heart palpitations

Hi – my name is Noreen. I’m a 55 year old woman with KTS. I’m happy to answer any questions you have. There is very little information about KTS – especially from a patient’s perspective. Imagine how much less information was available 55 years ago! My right leg is affected, from toes to mid-thigh. Like Patty, I was told I had “a birthmark”, “extra veins”, “bad veins” a “hemangioma”, etc. Finally, in adulthood, I read an article about KTS, and asked my doctor “is this what I have?” (the answer was “yes” ). I had numerous port wine stains on my leg at birth. Many disappeared with time, but I still have some large ones near my knee & ankle. I started walking a little later than usual (13 months), and in hindsight I wonder whether that was due to the discomfort associated with my leg. For the first couple years, I didn’t wear any compression on my leg. At about 3 years of age, I started wearing a compression bandage, and continued until my mid-teens. In my mid teens, I was measured for a compression stocking, and have used them ever since. My leg always tired easily, and was very sensitive to touch. However, I could rest with my legs elevated & return to some level of comfort. At about age 30, I had the short & long saphenous veins removed, mostly because of the risk they presented. They were many times larger than normal, with no valves – so the risk of uncontrolled bleeding was significant. I didn’t know then that surgery (and the scar tissue that develops afterwards) can impede lymphatic drainage. I no longer could get immediate relief by elevating my legs - and the swelling in my leg gradually increased. The really unfortunate part is that I could have taken action to prevent the complications – but I didn’t know, and my doctors didn’t inform me. For several years after surgery the swelling & pain in my leg increased. Then I found a lymphodema support group, where I learned many of the techniques that have helped me. I’ve improved a lot, but I’m not back to where I was pre-surgery, and never will be. I am, needless to say, a big advocate for prevention! If I can help you and your daughter avoid or delay any future problems, I’m happy to share any knowledge I have. If you’d ideas about caring for a child with KTS –you can email me @ nsereda@execulink.com. Or, if you’d prefer to talk – just email me & I will send you my phone #. All the best! Noreen