Sunday, March 18, 2012

I was born with Klippel trenaunay syndrome.

What is Klippel-Trenaunay Syndrome (KTS)?

Klippel-Trenaunay syndrome (KTS) is a rare congenital malformation involving blood and lymph vessels and abnormal growth of soft and bone tissue. Typical symptoms include hemangiomas (abnormal benign growths on the skinconsisting of masses of blood vessels) and varicose veins. Fused toes or fingers, or extra toes or fingers, may be present. In some cases, internal bleeding may occur as a result of blood vessel malformations involving organs such as the stomach, rectum, vagina, liver, spleen, bladder, kidneys, lungs, or heart. Individuals are also at risk for blood clots. The cause of the disorder is unknown. A similar port-wine stain disorder in which individuals have vascular anomalies on the face as well as in the brain is Sturge-Weber syndrome. These individuals may experience seizures and mental deficiency. In some cases, features of the Klippel-Trenaunay syndrome and Sturge-Weber syndrome coincide. Another overlapping condition is the Parkes-Weber syndrome, which is characterized by abnormal connectivity between the arterial and venous system (arteriovenous fistulas).

Is there any treatment?

There is no cure for KTS. 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.

What is the prognosis?

KTS is often a progressive disorder, and complications may be life-threatening. However, many individuals can live well while managing their symptoms.




What is Klippel-Trenaunay syndrome?

Klippel-Trenaunay syndrome is a condition that affects the development of blood vessels, soft tissues, and bones. The disorder has three characteristic features: a red birthmark called a port-wine stain, abnormal overgrowth of soft tissues and bones, and vein malformations.

Most people with Klippel-Trenaunay syndrome are born with a port-wine stain. This type of birthmark is caused by swelling of small blood vessels near the surface of the skin. Port-wine stains are typically flat and can vary from pale pink to deep maroon in color. In people with Klippel-Trenaunay syndrome, the port-wine stain usually covers part of one limb. The affected area may become lighter or darker with age. Occasionally, port-wine stains develop small red blisters that break open and bleed easily.

Klippel-Trenaunay syndrome is also associated with overgrowth of bones and soft tissues beginning in infancy. Usually this abnormal growth is limited to one limb, most often one leg. However, overgrowth can also affect the arms or, rarely, the trunk. The abnormal growth can cause pain, a feeling of heaviness, and reduced movement in the affected area. If the overgrowth causes one leg to be longer than the other, it can also lead to problems with walking.

Malformations of veins are the third major feature of Klippel-Trenaunay syndrome. These abnormalities include varicose veins, which are swollen and twisted veins near the surface of the skin that often cause pain. Varicose veins usually occur on the sides of the upper legs and calves. Veins deep in the limbs can also be abnormal in people with Klippel-Trenaunay syndrome. Malformations of deep veins increase the risk of a type of clot called a deep vein thrombosis (DVT). If a DVT travels through the bloodstream and lodges in the lungs, it can cause a life-threatening clot known as a pulmonary embolism (PE).

Complications of Klippel-Trenaunay syndrome can include a type of skin infection called cellulitis, swelling caused by a buildup of fluid (lymphedema), and internal bleeding from abnormal blood vessels. Less commonly, this condition is also associated with fusion of certain fingers or toes (syndactyly) or the presence of extra digits (polydactyly).

How common is Klippel-Trenaunay syndrome?

Klippel-Trenaunay syndrome is estimated to affect at least 1 in 100,000 people worldwide.

What genes are related to Klippel-Trenaunay syndrome?

The cause of Klippel-Trenaunay syndrome is unknown. Researchers suspect that the condition may result from changes in one or more genes that regulate the growth of blood vessels during embryonic development. However, no associated genes have been identified. It is also unclear how blood vessel malformations are related to the overgrowth of bones and soft tissues.

How do people inherit Klippel-Trenaunay syndrome?

Klippel-Trenaunay syndrome is almost always sporadic, which means that it occurs in people with no history of the disorder in their family. Studies suggest that the condition may result from gene mutations that are not inherited. These genetic changes, which are called somatic mutations, probably occur very early in development and are present only in certain cells. Somatic mutations could explain why the signs and symptoms of Klippel-Trenaunay syndrome are often limited to specific areas of the body. However, it is unclear whether somatic mutations are responsible for this condition because no associated genes have been found.

Where can I find information about diagnosis or management of Klippel-Trenaunay syndrome?

These resources address the diagnosis or management of Klippel-Trenaunay syndrome and may include treatment providers.

You might also find information on the diagnosis or management of Klippel-Trenaunay syndrome inEducational resources and Patient support.

To locate a healthcare provider, see How can I find a genetics professional in my area? in the Handbook.

Where can I find additional information about Klippel-Trenaunay syndrome?

You may find the following resources about Klippel-Trenaunay syndrome helpful. These materials are written for the general public.

You may also be interested in these resources, which are designed for healthcare professionals and researchers.

What other names do people use for Klippel-Trenaunay syndrome?

  • angio-osteohypertrophy syndrome
  • congenital dysplastic angiopathy
  • Klippel-Trenaunay disease
  • Klippel-Trenaunay-Weber syndrome
  • KTS
  • KTW syndrome

For more information about naming genetic conditions, see the Genetics Home Reference Condition Naming Guidelines and How are genetic conditions and genes named? in the Handbook.

What if I still have specific questions about Klippel-Trenaunay syndrome?

Where can I find general information about genetic conditions?

Danielle Cunningham from 16 & pregnant 3.

I really do not know all of the details about what took place between she and her Mom. I have a twitter account, but unlike some.......I do not live on twitter. I like Danielle. I started talking to her on FB, before the 3rd season of 16 & pregnant aired. She was the only one who ever took the time to reply to people, which I really liked.

We all make mistakes. Life does not come with an instruction booklet. If only if were that easy. I wish Danielle the best, and I hope that she and her Mom have worked out their differences.

What I think of Jenelle Evans from 16 & pregnant/Teen Mom 2.

I will probably catch a lot of slack for this one, but I call things the way I see them. Every one may not agree with me, which is okay. I understand that. We all have differing views and opinions on things.

I can see why Jenelle does the things that she does. It starts at home. She and her Mother have had a very rocky and toxic relationship. Her mother never seemed very supportive of Jenelle, and she put her down a lot. If she did it on the show, then she did it well before Jenelle ever became pregnant with little Jace. Every person handles depression in a different way. I believe that Jenelle was a deeply depressed person. I understand why she would be. When you are constantly yelled at by your own Mother, and called horrible names.......it will leave a mark on you that will never go away. Not a physical mark that one can see, but that emotional mark that goes straight to the bone.

Jenelle handled her depression by lashing out. It's her defense mechanism, when she is deeply hurt and upset. Put yourself in her shoes for just one minute. What if your Mother constantly called you a stupid bitch and a whore? How would that make you feel? Only someone who grew up dealing with this, can truly understand. Those that do understand, will know where I am coming from here.

From the moment Jenelle had Jace her Mom wanted to take control of everything. She never allowed Jenelle that bonding time with Jace. She criticized everything that Jenelle did, instead of trying to help her. Her Mother was never a positive role model to Jenelle. No wonder she turned out so screwed up. Bi polar illness can also be triggered by severe depression stemming from an abusive childhood whether the abuse be physical, emotional or both.

I am not making excuses for Jenelle, because she screwed up. She screwed up big time, but she is paying the price for that. She lost temporary custody of Jace, got arrested, convicted and is now serving a probation sentence. I am trying to get others to understand what led her down this road of self destruction. Like I said earlier, it starts at home. In my heart of hearts I do believe that Jenelle is a good person. She is just severely depressed,and when people are that depressed they do not make rational decisions. They also end up in toxic relationships as a result.

She seems to be really getting her life in order now. She is in college, serving her probation, spending a good bit of time with Jace and she is working on building a relationship with her Mother which they should have had all along. I see her getting Jace back FT. I see her getting a degree, and having a career.

I see a lot of my younger self in Jenelle. I messed up too. I messed up big time. I know that back then my head was so messed up. I was deeply depressed, and honestly I did not even want to live. I paid dearly for my screw up's, and I do not want to see Jenelle live through the personal hell that I have lived through in my mind for the past 20 years. None of us can go back in time. If we could, then this world would be a perfect place to live in. All we can do is work on the "now", and strive for a better tomorrow. I have the utmost faith in Jenelle, that she is going to turn out A.O.K.


HC. You are not a professional writer dear. You are a blogger, just as I am. ; )

There is a young twenty something year old woman on facebook, who also writes a blog about the MTV hit show Teen Mom/Teen Mom 2. She has stirred up quite a bit of controversy, with her biased blogs. She mainly targets Jenelle from season 2 16 & pregnant/Teen Mom 2, and Danielle from season 3 of 16 & pregnant. HC has a major axe to grind with the 2 of them, for some reason.


Well the purpose for this blog entry is this.............HC "claims" that her blog is her job. Look we are not all getting paid to write these blogs. We do it because we enjoy it. It's a hobby of sorts. HC however has had more exposure, mainly due to the controversy she causes. Also the things she likes to stir up. I personally say that she is just some obsessed fan who will stop at nothing to get to all of the girls from the show. You know what they say about opinions, and yes we all have one. HC has been banned from other sites in the past. One about parenting, and the other a military message board site. There she caused problems, just as she does now with her poorly written blog. Yes, she is a horrible writer. She "claims" to be a journalist. Sorry HC, you are anything but a journalist.


Her followers mainly consist of Middle school and High school aged girls. They flock to her like dogs in heat. It's rather sad, when you think about it. So to anyone who reads this, Teen Mom talk is nothing but a blog. She does not get 1st hand info from any one on the shows. She mainly steals the stories from starcasm, or she gets the info straight from their twitter pages or their facebook pages. Any one of us can do that.

Hilton Garden Inn

My husband and I stayed here during a weekend trip back in Feb 2010. Very nice newer hotel. It is very clean, and inviting. From the moment you walk into the door, you are greeted by very warm and friendly faces.

Our room was a king room. As you walked into the room the bathroom was to your right. Straight ahead and to your right past that was the king size bed. These are beds where you can adjust the firmness, which I really liked. There were plenty of pillows on the bed, which is something else that I really liked. The room had a fireplace in it, which we used with it being Feb. Next to the fireplace, there was a recliner that my husband sat in. There was also a little desk where you can sit your laptop. Our view was the parking lot, and another building. You really can't see the Parkway from your room, but that was okay for me.

The hotel has an onsite restaurant. We did not utilize the restaurant, but we did go to the bar. We had a great time with the Russian bartender, while we watched the Daytona 500. He made me some amazing mixed drinks that I had never tried before. I really liked that. I could finally sit back and relax. I am usually always the designated driver, but here you can drink and then go to your room.

The hotel also has a swimming pool and a hot tub. We did not use either one while we were there. It was very cold that particular weekend. Temps in the teens, with sleet. It snowed up in the higher elevations, which was so pretty to look at from downtown Gatlinburg.

Overall I'd give the Hilton Garden Inn in Gatlinburg, 2 thumbs up. Lovely hotel. It's very clean, and a newer hotel there in town.