Living With Klippel Trenaunay Syndrome (KTS) – Symptoms and Treatments

Learn what Klippel Trenaunay syndrome (KTS) is and how to live with it, from a 21 year old who was diagnosed with this rare congenital malformation at birth.

Despite the multiple procedures and surgeries she’s had, Arianna is positive about her life and determined to help others cope with the symptoms and treatments of illnesses such as KTS.

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

When I post Survivor’s Stories, I like to include a book at the beginning of every article 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.

In the meantime, if you’ve been diagnosed with KTS or another chronic illness, 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 KTS 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.

Here’s how Arianna copes with the symptoms of Klippel Trenaunay syndrome…

What is Klippel-Trenaunay Syndrome (KTS)?

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).

There is no treatment or cure for KTS. Laser surgery can diminish or erase some skin lesions. Surgery may correct discrepancies in limb size, but orthopedic devices may be more appropriate. KTS is often a progressive disorder, and complications may be life-threatening.  However, many individuals can live well while managing their symptoms.

How Arianna Copes With Klippel Trenaunay Syndrome

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.

Tips for Living 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.

My particular illness impacts its patients in various ways, so it would be hard for me to give another KTS 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.

If your skin is severely affected by Klippel Trenaunay syndrome, you may find Psoriasis – How Alisha Copes With the Symptoms of Skin Disease helpful.

Does Arianna Live in Harmony With Her Illness – or Fight It?

Both. 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. I along with my KTS colleagues have all significantly been impacted by this disease and it gets progressively worse as we age. I want to help ensure a better life for those who will be impacted by this condition in the future.

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:  Arianna talking about Klippel-Trenaunay

This summer, I will be speaking at the national KTS 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.

It is a constant battle, but I have learned so much over the years and hope to help others like me someday.

If you have any questions for Arianna, find her on twitter @ariannakts, email her at faroa@merrimack.edu, or visit her blog Toujours Belle (toujours belle means “still beautiful” in French. I chose the name because in spite of the abnormal difficulties we experience, we are still all beautiful beings both inside and out).

And if you have any thoughts about Klippel Trenaunay syndrome – or you want to share your experience with it – please comment below!

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