How to Live Well With Klippel Trenaunay Syndrome (KTS)


Klippel Trenaunay Syndrome (KTS) is a rare congenital malformation; here’s how 21 year old Arianna is living with this condition, plus important medical facts about the symptoms and treatments of KTS. In this article, Arianna describes what it’s like to live with Klippel Trenaunay syndrome as a young woman.

How to Live Well With Klippel Trenaunay Syndrome (KTS) symptoms

Arianno Faro

“Klippel Trenaunay syndrome is very uncommon and not known by most, so I feel it is important to speak up for it as much as I can, to promote awareness and research,” says Arianna, who has lived with Klippel Trenaunay syndrome since birth. “I along with my KTS colleagues have significantly been impacted by this disease and it gets progressively worse as we age. I want to help ensure a better life for others who will be impacted by this rare and progressive disease in the future.”





Despite the multiple procedures and surgeries she’s had, Arianna is brave, optimistic, and positive about her life and determined to help others cope with the symptoms and treatments of illnesses such as Klippel Trenaunay syndrome. Here’s how she’s living well with KTS

“It’s okay to have days where you are upset about living with Klippel Trenaunay syndrome – you don’t have to hold everything in,” says Arianna, who is a full-time college student at Merrimack College. “If you hold your emotions in, they will boil over.”

Whether you yourself have been diagnosed with KTS, or your child has – it’s important not to stuff down your emotions. Talk and write about your fears, disappointment, anger, shock, and frustration. Coping with any health condition is scary and difficult; living with the symptoms and finding treatments for a rare congenital disease such asKlippel Trenaunay syndrome is downright painful. You’ll find the medical system confusing and frustrating, the doctors baffling, the information confusing and misleading.

But take heart! You are not alone. Find supportive people to help you cope, whether it’s a chronic illness support group, a hospital social worker, or a counselor who specializes in physical health-related issues. Learn what you can and can’t expect from your friends and family. Learn how to stay positive when you’re sick.

What is Klippel-Trenaunay Syndrome?

This summary of the causes, symptoms, and treatments of Klippel-Trenaunay is from the National Institute of Neurological Disorders and Stroke:

Klippel-Trenaunay syndrome 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 skin consisting 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 Klippel-Trenaunay syndrome 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).

Below, I share more information about the difference between Klippel-Trenaunay syndrome and Parkes Weber syndrome.



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There is no treatment or cure for Klippel Trenaunay syndrome

Laser surgery can diminish or erase some skin lesions. Surgery may correct discrepancies in limb size, but orthopedic devices may be more appropriate.

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

How Arianna Lives With Klippel Trenaunay Syndrome

Arianna’s story below is in her own words…

symptoms treatments Klippel Trenaunay Syndrome (KTS)

How to Live Well With Klippel Trenaunay Syndrome (KTS)

My Klippel Trenaunay has flared often over the years. Growing up, I had a multitude of procedures and hospitalizations but was still able to live somewhat of a normal life. However, when I hit high school (literally the first week of my freshman year), I started getting severe cellulitis infections on a constant basis.

For the next four years, I was shuffled in and out of the hospital along with having several operations. I also have dealt with blood clots my entire life.

How to cope with Klippel Trenaunay syndrome

Surround yourself with people who are supportive and will listen to you. Keeping yourself surrounded by positive people is essential; as much as possible, try not to associate yourself with negative ones. Klippel-Trenaunay syndrome impacts patients in various ways, so it would be hard for me to give another Klippel-Trenaunay syndrome patient specific advice based upon the condition itself.

If your loved one has been diagnosed with Klippel Trenaunay syndrome, expect that they’ll need time to themselves some days to cope with everything they have going on. Don’t be offended if they request some time alone. If they decline an invitation to go out, don’t assume they are just bailing. Chronic illness is exhausting physically and mentally, and not everyone realizes the toll it takes on one’s mind.

Find the benefits of living with Klippel Trenaunay syndrome

Klippel Trenaunay syndrome has motivated me to do an array of things. About four years ago, I wrote an article for Children’s Hospital Boston’s Dream magazine called “A rare disfiguring disease won’t stop me.” And, I did a small documentary about me talking about the symptoms of Klippel-Trenaunay syndrome.

This summer, I will be speaking at the national Klippel-Trenaunay syndrome  conference in front of several doctors and patients. I was discovered through an old blog of mine in which no longer exists, but I have recently started a new one that will chronicle journeying through life with chronic illness- and the anxiety (OCD)/depression that ensued following all the medical chaos.

Living with Klippel Trenaunay syndrome is a constant battle, but I have learned so much over the years and hope to help others like me someday.

Arianna’s bio, from her blog Kisses for KTS (Klippel Trenaunay Syndrome): I am a 23-year-old college student who was born with KTS. At 18, I was hit really hard with anxiety and depression. I am fortunate to have had support from amazing professionals and family during that time. I want those who are also struggling with chronic/mental illness to know there is indeed hope for them, which is why I am majoring in psychology at Merrimack College. 🙂  I hope to garner awareness as to what Klippel is and the emotional toll it can have on its patients/family members. I am treated by the outstanding Vascular Anomalies team at Children’s Hospital Boston.

Her past blog was called Toujours Belle (toujours belle means “still beautiful” in French). She chose the name because in spite of the abnormal difficulties we experience, we are still all beautiful beings both inside and out.

Additional Info on KTS – from RareDiseases.org

Klippel-Trenaunay syndrome occurs most frequently in the lower limbs and less commonly in the upper extremities and trunk. People who have Klippel-Trenaunay syndrome may have the following symptoms and features, which can range from mild to more extensive.

Port-wine stain

This pink to reddish-purple birthmark is caused by swelling of tiny blood vessels (capillaries) under the skin. The birthmark usually covers part of one leg, and sometimes one arm, and may get darker or lighter with age. Some areas may be prone to bleeding and infections.

Vein malformations

Living With Klippel Trenaunay SyndromeThese include swollen, twisted veins (varicose veins) usually on the surface of the legs, which can cause major pain and skin ulcers due to poor circulation.

Deeper abnormal veins in the arms, legs, abdomen and pelvis can increase the risk of blood clots (deep vein thrombosis) and cause a life-threatening condition called pulmonary embolism if they dislodge and travel to the lungs. Spongy tissue filled with small veins in or under the skin can cause bleeding, infection or inflammation.

This symptom can cause a great deal of pain for someone living with KTS.

Overgrowth of bones and soft tissue

Overgrowth of bones and tissue begins in infancy and is usually limited to one leg, but it can occur in an arm or in the person’s trunk (but this is rare). This overgrowth of bone and tissue creates a larger and longer extremity. The overgrowth can cause pain, a feeling of heaviness and problems with movement. This is one of the most difficult parts of living (well) with KTS.

Lymphatic system abnormalities

The lymphatic system is part of your immune system, which protects you against infection and disease. An abnormality can cause fluid buildup and swelling in the tissues of your arms or legs (lymphedema), the development of small masses (lymphatic cysts) in the spleen, or infection of the layer under the skin (cellulitis).

Causes of Klippel-Weber-Trenaunay syndrome

The precise cause of Klippel-Trenaunay syndrome is unknown, but may involve genetic changes that are not inherited (mutations). More research is needed to determine the causes.

According to the National Organization for Rare Diseases, the cause of KTS is “a mutation in primitive cells that form a limb that were destined to become blood and lymphatic vessels, fat, and bones. There is gathering evidence that this is a somatic mutation in the gene PIK3CA.” Those genetic experts add that because this genetic alteration does not occur in the germ cells, KTS cannot be passed on in a family.

Help Living Well With KTS

I usually share a book at the beginning or end of every one of my blog posts, so readers can get more information. But, I didn’t find anything related to Klippel Trenaunay syndrome on Amazon. There are lots of medical textbooks about “human malformation” and syndromes of the skin, head and neck, but nothing on coping with the symptoms and treatments of KTS. Maybe Arianna will be the first to write a book about Klippel Trenaunay syndrome….or maybe you will!

But, there are books on living with chronic disease that are encouraging and helpful.

How to Live Well With Klippel Trenaunay Syndrome (KTS)In How to Live Well with Chronic Pain and Illness: A Mindful Guide, Toni Bernhard offers comfort, understanding, and advice for those who are suffering – and those who care for them. She isn’t living with KTS, but she has personal experience with chronic pain and illness.

Chronic illness creates many challenges, from career crises and relationship issues to struggles with self-blame, personal identity, and isolation. Bernhard addresses these challenges and many more, using practical examples to illustrate how mindfulness, equanimity, and compassion can help readers make peace with a life turned upside down.

She shares:

  • Mindfulness exercises to alleviate physical and emotional pain
  • Concrete advice for negotiating the everyday hurdles of medical appointments, household chores, and social obligations
  • Tools for navigating the strains chronic illnesses such as Klippel Trenaunay syndrome can place on family and social relationships

Several chapters are directed toward family and friends of the chronically ill, helping them to understand what their loved one is going through and how they can help.

If you want to offer support and cheer to someone diagnosed with Klippel-Trenaunay syndrome, read Get Well Soon Messages and Gifts for Cancer Patients. The diseases are different, but the sentiments are the same.

Have you been diagnosed with Klippel Trenaunay syndrome or another chronic disease? You may find Heal Your Body A-Z: The Mental Causes for Physical Illness and the Way to Overcome Them interesting. I’m not saying KTS has a mental or emotional  cause – it’s diagnosed at birth! But diseases like Klippel Trenaunay syndrome can bring on physical and emotional health complications that can be remedied by looking inward. Learning how your thought patterns affect your physical health can help you live in harmony with chronic illness.

A historical tidbit about the mis-named “Klippel-Weber-Trenaunay syndrome”

According to the National Organization for Rare Diseases’s page on Klippel-Trenaunay syndrome, the name “Klippel-Trenaunay syndrome” has been controversial in medicine since the first report of this rare congenital malformation and disease in the early 20th century. The French physicians, Klippel and Trenaunay, described patients with capillary stains, venous varicosities, and overgrowth.

At about the same time, English dermatologist Parkes Weber reported the combination of “hemangiomas” and overgrowth of a limb. Doctors thought the two syndromes were the same – but they are actually different. They didn’t realize this until more recently — but for many years, the names of all three medical doctors were linked as a confusing and incorrect medical condition “Klippel-Weber-Trenaunay syndrome,” which still is incorrectly used to this day.

Today, it’s well-recognized that Parkes Weber syndrome and Klippel-Trenaunay syndrome are two entirely different medical conditions. Parkes Weber syndrome consists of fast-flow, multiple microscopic arteriovenous connections with variable capillary staining of an enlarged limb (usually the lower extremity, which is partly why it was confused with KTS).

If you have any thoughts about Klippel Trenaunay syndrome – or you want to share your experience with it – please comment below. I can’t offer advice or additional information, but you may find it helpful to write about your experience with KTS, as a patient or family member.

xo



SheBlossoms Laurie Pawlik Kienlen


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38 thoughts on “How to Live Well With Klippel Trenaunay Syndrome (KTS)

  • Catherine Simmons

    Hi, my name is Catherine
    I was born with KTS in 1964, I have had issues with Cellulitis mostly as an adult, and I find things are getting worse as I get older. I take Sirolimus daily. And have to deal with side effects. I’m always in pain now. Sometimes I don’t even realize it. It’s harder to do the things I want to do and use to do. Going to the beach is a real treat, but I do it anyway. I have always been a happy, positive person, but I find I get down more often. Not sure if it’s because I’m getting older and haven’t accomplished all my goals, or if it’s dealing with a disfiguring birth defect that now keeps me in pain. I’m sure it’s both. It hurts to workout, but I know it helps. Even though this is not my fault it makes me somehow feel like I have failed. Maybe I think I need to conquer it. It makes no sense, but emotions don’t always make sense. I feel for people that have this or any kind of birth defect. It makes you feel like your not a whole person, or that you are weak. The truth is we are stronger than most because we have to be. Just a few of my thoughts, Catherine……

  • Dena

    I was born with KTS as well in my left leg, its more of a mild case, i’m 26 now but in the last few years i’ve dealt with extreme numbness in my leg & its extremely uncomfortable. Ive had a couple surgeries as a kid & am thankfully mentally okay with everything now that I’m older. I went to The Mayo to ask my Doctor why i’m experiencing this numbness/tingly feeling (from toes to knee) & he basically blew it off. Does anyone else have this numb/tingly feeling?

    • Catherine Simmons

      Hi Dena
      I have it in both legs. My right is worse than my left by far. I do however get some numbness in my legs, and for me its usually if I have my legs straight out and I’m sitting. Like on a bed or a chair with them out. I feel like it’s just the position and moving more helps a lot. I also get restless legs at night. I sleep with a wedge to keep them elevated. I wear compression stockings daily and put them on before I get out of bed. I think because our circulation is so compromised we have these issues and need to find ways to manage them. I kind of think it’s our “normal” Doing things like swimming, spin classes and ellipticals help a lot. I hope your legs feel better! Catherine

  • Katie

    Hi every one I have a 3year old boy he was born with klippel trenaunay syndrome I’ve not had much help with how to help him with the pain he has it all down the left side of his body he gets up in a morning crying and Cry’s a lot all day. When he ueses the toilet he can’t stand up after getting off with pain in his leg can any help me give me any ideas of y he’s crying all the time please

  • Grace

    My daughter was born with Klippel Trenaunay Syndrome and she is 43 now. The disease has worsened and I’m very worried for her. It’s extremely swollen and painful. She has given up hope since numerous surgeries and treatments failed. She thinks she may lose her leg. I wish I could find help for her.

  • Scott Hubbard

    Hi Everyone
    I To have klippel trenauary and as affected me a lot over the years.
    It can really get you down and no one else realises the ups and downs and pain.
    After four operations a blood clot four leg uclers cilellits twice veins removed aswell.
    It’s not nice and mentally psychic and tiring sometimes all in one.
    Scott.
    Kent
    England

  • Samantha Bielby

    Wow this has been so supportive- I haven’t spoken with anyone ever who has Klippel Trenaunay Syndrome and it’s so nice to know others really understand.
    I am 31 and have swelling in my left leg and foot. I have learned to live with it and Wear the right clothing but it’s so nice to hear from others and what you do. Thank you and good luck all keep strong

  • Sherman

    My sister was recently diagnosed with Klippel Trenaunay Syndrome. This was a helpful article because I don’t know how she feels or how to help her. Thank you.

    I’d be especially grateful if other women with KTS would share how they’re coping with the diagnosis and treatment. There’s not as much information online as I expected, and I want to know how to support my sister.

    Thank you for whatever help you can offer on living with Klippel Trenaunay Syndrome.

  • Laurie Post author

    Hi Emma and Wendy,

    I have emailed you both with your email addresses, so you can connect about the Klippel Trenaunay syndrome study. May it be good and valuable for you both!

    – Laurie

      • Laurie Post author

        Hello Cathy,

        I hope your family and daughter are doing well – I know Klippel Trenaunay Syndrome is a difficult condition to deal with. I sympathize with you, and hope you find best and most helpful information.

        I’m not involved with the study – I just interviewed Arianna to increase information and exposure on KTS – but here’s Emma’s Facebook page link:

        Radiant Health & Reflexology
        https://www.facebook.com/reflexologywithemmabarker/

        May you find wisdom and guidance, peace and healing.

        – Laurie

  • Laurie Post author

    Dear Allayah,

    Thank you for writing about what it’s like to cope with Klippel Trenaunay Syndrome as a 17 year old. You wouldn’t believe how wise, kind, and loving you sound! I know it’s difficult for you to live with this disease, but I have a feeling you will not only survive – you will become a more compassionate, kind, caring, and amazing young woman!

    Life will get better for you. Don’t give up hope – and don’t stop searching for tips on how to live with KTS! The more you learn, the more you connect with others, the stronger and better you’ll become.

    You inspired me to write this article:

    What to Do When You Feel Ugly and Sad
    http://blossomtips.com/am-i-ugly-person-what-to-do-i-feel-sad/

    I will keep you in my prayers, for strength and healing and comfort. May you reach out and find support and love in your friends and family.

    Take care of yourself, and stay open to God’s love, healing, power, and freedom.

    In peace and passion,
    Laurie

  • Allayah Terry

    Hey, my name is Allayah and I’m 17 with KTS. I don’t have it has bad as a lot of people. I only have it on my right leg. It stays swollen all the time & hurt very bad sometimes where i have to take a antibiotics. I’m struggling more mentally with it being in highschool and all. People just stare or ask a lot of questions and I hate talking about it because I feel so ugly with it. To me it’s not fare cause everyone else has pretty legs and I don’t and I hate living with that mindset. I like hearing your story knowing I’m not alone but still to this day I don’t know how to live with it.

  • Laurie Post author

    If you think you have Klippel Trenaunay syndrome because you seem to have the KTS symptoms in this article – but you don’t have an official diagnosis – I think that your first step should be to see your family doctor. He or she can then refer you to a more specialized physician who can give you a more detailed assessment and treatment plan for KTS symptoms.

    I wish you all the best as you move forward. Klippel Trenaunay syndrome isn’t one of the fun or glamorous diseases — but then again, which ones are?

    My prayers are with you,
    Laurie

  • Traci Cicherski

    What type Dr should I go to to get a for sure diagnoses of KTS? I am 52 yrs old and positive I have it. Thanks Traci

  • Sherri Cano

    The best of luck to you in your daily life dealing with KT Syndrome. I’m 53 years old and have found that the older I get the worse the pain. I feel as if my family doesn’t understand my limitations. Each year I seem to be able to do less and less. It is very depressing. I sometimes feel that they think I’m making up the pain. Perhaps as more people respond to these blogs we can all understand a little better how to cope. Enjoy your college years and just take it one step at a time!!!

  • Laurie Post author

    Dear Monica,

    Thank you for sharing your experience with Klippel Trenaunay Syndrome! It’s great to hear what worked for you, and that the treatments that helped with the pain, swelling, and other symptoms of KTS.

    I have heard many people say that surgery isn’t worth it — and not just for Klippel Trenaunay Syndrome.

    Your methods of treating KTS seem non-invasive and healthy. Thanks again for sharing; I know others will be helped by your experience.

    Blessings,
    Laurie

  • Monica

    Hello everyone. I am a 31 year old female who has been coping with KT-Syndrome with the AV fistulas of Parks weber, but no other parks weber symptoms such as seizures or learning defects. I have the KT-Syndrome with CVI which causes my left leg to swell to 4x the other normal leg, I have enlarged dilated veins, port wine stain birthmark on my left hip, I have pelvic involvement. My skin is in amazing health and shape and intact and smooth, this is key to preventing cellulitis infections. I went to CHOP, Shriners, Lerner clinic, DuPont, even the Mayo Clinic to see “The Experts”. I probably knew more about it than any of the doctors. KT should be treated conservatively!!! I can not emphasis that enough, surgeries will just make it worse, there is no cure, no surgery as very little treatment options. If you have the KT where it causes swelling and venous edema and lymphedema, you need to elevate above your heart as often as possible and wear a gradient compression stocking when you are up walking. If you do not do this you will compromise your skins integrity allowing for permanent brawny edema. Which than leaves you open to more cellulitis infections. It is important to keep your toes and skin clean, do not walk barefoot, address any cuts or wounds immediately with disinfecting. As soon as I was 2 years old, my parents put me on snow skis, my family was an active family and they were determined to have me do anything they could do. And for most of my life I did, I became an expert level skier, and you know what, the motion of skiing, the tight boot really helped to push the excess fluid out of my ankle and calf area. I played sports, I water skied, I became an accomplished violinist, I built a grandfathers clock in wood shop, from scratch, not a kit and a mission style coffee table. I got a degree in Pharmacology/Toxicology because I figured since no one was researching for KT I would find a way to do it myself. Boy was I wrong, I worked in pharmaceuticals for 10 years, in big pharma, academia, and biotech. What I found was that not a single thing they were doing was for the benefit of anyone. So I went back to school to become a clinical herbalist. The Native Americans believed there is an herb out there for every condition, and I know God have us all the seed bearing plants and herbs to use…so thus began my journey of finding the natural cure. Before herbalism, I use to have to be rushed to the hospital for cellulitis infections and get toxic antibiotic IV drips. What I didn’t know until I became a scientist was that I was harming my body a great deal with these antibiotics. So my
    Very last infection in 2015, I cured without antibiotics, I used herbs. I used oregano oil topically and goldenseal internally and topically. I used green healing clay mixtures on the red spots and drank a lot of water. It is possible to cure cellulitis without antibiotics even in KT patients with excess edema. I am living proof. When I turned 28, I began to get that progressive thing about this disorder happening. I could no longer work 40 hours or even part time without compromising my leg swelling and health. The compression stockings offered little relief and the neurological pain is unbearable. But I’ve never been on painkillers I use herbal pain solutions, and I’ve never been on anti-depressants or even gone to a psych or therapist. This disorder, though very physical, can be overcome mentally at times, and I think that is why I’ve done so well with it. Don’t get me wrong if you ask my family, I definitely have my down moments and moments of anger and frustration, but you can’t keep those moments going. So please, anyone with KT or kids with KT, I beg you to make sure the doctors treat you or your child conservatively, no surgeries, because there are no surgeries proven to work, they infact make things worse and cause more cellulitis infections. And always wear compression when out and about, and elevate as much as possible. Do not eat refined sugar or lots of carbs, eat healthy fats and raw cane sugar or maple. Sugar really is bad for this condition. Also I know it has been helping me out and it can’t hurt, I take Raw Apple Cider Vinegar with The Mother 2x daily. I dilute it half with water about a shot glass worth. This has really helped with pain and swelling, and overall makes the rest of me feel great too. I am currently working on a book, so maybe there will finally be something out there for us. You are all in my prayers, and remember, the medical community knows very little about this condition, so to pretend they can even do anything for you other than conservative compression and massage and elevation and keeping the skin clean, is just smoke and mirrors. Every surgerical intervention I saw for KT made it worse…I have never had any surgery on my leg and it has never had the complications of those who have gone under the knife. I know for some it’s too late, but for others with small children with KT…unless it is life threatening and the only possible option, do not let the doctors operate!!

    • Emma Carlin

      I’d like to connect with you if you wouldn’t mind? I’m based in the U.K. I am a reflexologist and I am taking on a case study with KTS and some of what I have read of yours is very interesting to me and may help me to help her. If you’re interested please reply xx

    • Wendy

      Hello I’m Wendy I have kts it goes from tors to middle back. I am having a lot of problems. No feeling in foot, sores all over body, pelvic pain, bad periods, stomach pain, can’t poop, 6 blood cloths one going to lung very scary. I can go on this disease is getting the best of me I don’t know what to sad part is Dr’s don’t either.

      • Monica

        Hi Wendy,

        Have you tried taking a tablespoon of raw apple cider vinegar (with the mother) mixed with a bottle of water daily? Or any other herbal blood thinners? Ginger, cayenne pepper, turmeric, garlic (contains small amount of vit. K2, but the blood thinning properties outweigh it’s small K2 (which is a factor of blood clotting). Garlic has never caused clots. You should take a clove and mince very finely and let sit for 5-10 minutes and then I use a little bit of butter and put the raw garlic on that and take that daily. It burns but will do wonders for the body. As far as the sores, have you taken anything to support your Liver? Anything skin related one must look to the Liver. Things like milk thistle, dandelion rt, burdock rt, red clover, calendula? I would take the milk thistle and dandelion rt and burdock rt in a tincture form (HerbPharm is my favorite brand) and the red clover and calendula I would make a tea. Medicinal strength tea is 1/2 ounce of dry herb to two cups of hot water, let it steep for 20-30 minutes and strain. You can add high quality raw honey to sweeten the tea. There are also a lot of herbs helpful for lymphatic congestion and cleansing. Also drinking a large amount of water is necessary to help with circulation. I really hope you are able to find what works for you. Unfortunately because of how rare and how different every case of KTS is, there is a journey to find what works for you specifically. Goodluck! I do not have Facebook, so I will not be able to connect through that.

    • Wendy

      Hello I’m Wendy I would like to connect about kts with you. I’m 40 I have kts and I have had several clot. Mine goes from my toe to middle back. Wendy Swartz fb my email is frozen

  • Laurie Pawlik-Kienlen Post author

    Crystal, thank you for telling us how you’re bouncing back from transverse mylitis! You’ve come a long way from being diagnosed with Klippel Trenaunay syndrome three years ago. You’re a survivor, and I will keep you in my thoughts and prayers.

    Marina, I’m sorry you didn’t find help for your daughter’s Klippel Trenaunay syndrome here. I hope you found the answers you needed on other websites or forums – and of course in person! I’ll pray for strength and energy, peace and joy, and hope and faith for your daughter.

    Blessings,
    Laurie

  • Crystal lambus

    I have transverse mylitis and I’m bouncing back slowly it been three years. I’m learning to walk again, and i came a long way. They said i will never walk again but im taking plenty of steps now.

  • Marina

    Dear Ariana,

    Thank you for your blog and it’s incredible to see how you have persevered despite KTS.

    I am the mother of a 3 1/2 month old baby girl and was told yesterday that she has KTS. It’s a pretty devastating thing to hear when you imagine your child might suffer pain her whole life. I have many questions for you and I hope it is ok that I ask them. Do you have any advice on what types of exercise would be best for her long term. Swimming is one thing I am considering and intend to get her compression garments to help manage swelling. Also, which types of doctors aside from orthopedic surgeons and dermatologists have you seen. Are you familiar with Boston children’s hospital program in treating KTS- would you suggest a person to contact there? Have you had any surgeries to address a leg length problem? Also have had any of the sclerotherapy treatments? Have you developed a scoliosis due to the slight leg length discrepancy? Did uou start to actively see a psychologist to help with the depression of coping with this disease? Also, what value does seeing a geneticist have? Lastly, are you on chronic blood thinner for history of clots?

    I have so many questions.. I hope it is ok I ask. I feel pretty helpless right now. Thank you in advance for any advice you might be able to give me.

    Kind regards,
    Marina

    • Sarah Bonte

      I am a 35 year old female living with KTS. Just had my first blood clot and consider myself lucky to have a relatively mild case. I can’t tell you all how amaze these forum are because for the first time I don’t feel alone and in the dark about all of this. I feel like doctors have no idea how to help and I too am looking for more herbal and natural approaches. My questions are for those with clots, what works to prevent more as I do t want to be on thinners. Also, my foot and leg are always hot? Any suggestions on that? As well I feel living in hot climates make it worse and feel alcohol defiantly makes it worse. Maybe that’s the sugar? Anyways I just wanted to say thank you to everyone who has shared it truly helps to just talk! For me exercise, nature, water (cold rivers, ocean) and positivity helps the most.

      • Wendy

        I have have clots I have to be on thinner for life. I almost lost my life in 2008 clot going to lung. Clots are very serious. Please do what the Dr’s tell you I didn’t listen and stopped taking my thinners.

  • Laurie Pawlik-Kienlen Post author

    Thank you for being here, and sharing what it’s like to live with Klippel Trenaunay syndrome. I will keep you in my prayers, for healing and no pain and peace with however the disease is unfolding. May you trust God to protect you, and give you strength for the journey!

  • Annonymous

    I also have kts. Although I do not have it severely, I have been praying for healing and ask for others to please also pray for healing for me!

  • Toreka Paulo

    Thank you so much! You have no idea How much you have inspired me to learn more about my illness, Klippel Trenaunay syndrome. As i started reading through I couldn’t stop my tears and I still cant stop crying.

    I have Klippel Trenaunay syndrome and apparently Lymphedema too. And tbh i dont even know much about it. Neither do the Lymphedema doctors that diagnosed me. Im from melbourne Australia and feel like theres no support here. Im in constant excruciating pain and Im suffering day in and day out. Im now a mother of 3 gorgeous babies that I barely spend time with because my condition is so painful I just sit in my room. I get upset very easily and frustrated at the fact that i cant move around and am not mobile enough to spend quality time with my children.

    Thank you. This has motivated and inspired me to learn more about Klippel Trenaunay syndrome and push for more awareness…. I dont know what Klippel Trenaunay syndrome is apart from the printed google sheets i get handed and neither do my family!

    I hope to hear from you soon. God Bless xox

  • Karla

    Hi, my 6 year old daughter was diagnosed with Klippel Trenaunay syndrome last year. She’s always had a port wine stain on her thigh, followed by venous malformations and varicose veins. Her middle toe on the leg is longer than the rest of her toes and there is huge vein leading up to it that is very thick and sticks out on her foot (It’s the same vein that is a varicose vein on the side of her calf muscle. She has a slight length difference between her legs, as well as width. She’s also got knock knees.

    Most people don’t notice it because it’s not as severe as some of the pictures I’ve seen online, but my concern is that I keep hearing that Klippel Trenaunay syndrome progresses with time. For now, she is not at all affected by it, other than cosmetically. I see that you were diagnosed at 13, did you have any symptoms prior to your diagnosis?

    It seems like I have to do a lot of digging to find any info on Klippel Trenaunay syndrome other than the regular websites that just describe what it is word for word as the other websites. Anyway, I stumbled across this page as I was trying to search Klippel Trenaunay syndrome online.

    Thanks for your blog!

  • Ashley

    When I first found out I had Klippel Trenaunay syndrome I felt like my whole world came crashing in. At the time I knew I had a problem but having a name for it all scared me I was 13. And at first the doctors didn’t know what it was. They just knew how to fix it. Luckily I don’t have it as severe as most. But it is still a struggle.

    I started high school having to wear a super tight compression stocking (always wearing pants because I hated people knowing I had this problem. I went through numerous surgeries to fix the veins because more kept forming and doctors even brought up amputation wich crushed me. But I pushed through Klippel Trenaunay syndrome and I’ve gone a year with out having a surgery.

    Exercise helped it a lot I am now 17 and I am to the point where I don’t get pain all the time. I don’t have to wear the compression stocking all the time. And as good as its doing I do still get frustrated but you know what I actually like showing of my birthmark (port wine stain) to everyone because I now love when they ask me about it and I tell them about my struggle with Klippel Trenaunay syndrome.

    I’m proud to be able to say I dealing with it and I got through it d am living a for the most part normal life. Don’t ever give up no matter how hard Klippel Trenaunay syndrome may seem.

  • Arianna Faro

    Hi Lily! Thank you so much for your comment. I am so sorry to hear of all in which you must battle on a daily basis; I cannot even imagine how difficult that must be; dealing with just one condition is enough to exhaust me, so I give you a lot of credit as you must be an incredibly strong person/fighter!

    With Klippel Trenaunay syndrome, I think it is important to remember that it does manifest itself in each patient differently; sometimes on a dramatic scale, unfortunately. Some patients live a relatively normal life with it while others are born with it to a much more debilitating degree, overall impacting their quality of life significantly.

    I also know of cases in which Klippel Trenaunay syndrome impacts people’s internal organs. In fact, in one close KTS friend of mine who has the condition in his arm/chest, his malformation was trying to push his heart over and his family was told he would more than likely not survive because of this when he was a young baby (he is now in his twenties).

    So while I am lucky enough to not have my organs be impacted by Klippel Trenaunay syndrome, there are unfortunately patients whose internal organs are greatly impacted by this condition.

    Wishing you all the best!
    Arianna

  • Arianna Faro

    Thank you so much for your kind words, Mrs. Merlino! You have always been a positive force within my life and for that I am very much so grateful.

    Thank you for having been not only an excellent and inspirational teacher, but a true friend! You have helped me live with the symptoms of Klippel Trenaunay syndrome.

    Much love,
    Arianna

  • Lily

    Its all about perspective. Yeah Klippel Trenaunay Syndrome is a challenge and mine causes me severe pain and weakness in my affected leg but try KTS, Crohns disease & Graves disease. Out the three conditions I have my KTS is the least problematic of the three. The symptoms while not curable are manageable (to a certain degree) I can take active steps to looking after it and best of all I can see it – my other conditions affect my internal organs so I only get information on what is happening with them when I have hideous symptoms or the pain that feel like my body is going to crack apart.

    I’ve always said I can cope with my KTS and it’s symptoms and it’s manifestations but having three conditions that all challenge your survival is a real roller coaster. When I wake up in the morning it’s a pot luck as to which
    condition will rear its head that day and try to take me down.

    So yes, KTS is the most unusual condition I have….but not the worst. It really is all about perspective.

  • Jan Merlino

    I am a former teacher and later, friend, of Arianna’s. What most impresses me about her is her positive nature and her incredible spirit. She is one of the kindest, most caring people I know.

    Her talent as a writer is evident and I think that your suggestion that she write a book about Klippel Trenaunay syndrome is an excellent one.

    She is truly a beautiful person, definitely from the inside/out.