Over the years, I've come to understand that you have to embrace yourself for who you really are. While I am a victim of KT and its side effects, it's important to me that I don't live or think like a victim.
--Patient Arianna Faro
At Children’s Hospital Boston, we know how difficult a diagnosis of Klippel-Trenaunay syndrome (KTS) can be, both for your child and for your whole family. It’s a rare condition that’s not widely understood.
Here’s what you need to know:
- KTS is a rare congenital (present at birth) condition that results in your child having a large number of abnormal blood vessels.
- No one knows the precise cause.
- It’s a complicated condition, and it affects different kids in different ways.
- The first step is to have your child evaluated by members of an experienced interdisciplinary vascular anomalies team.
- No single specialist can manage KTS and its associated problems, as different interventional techniques and surgical procedures are often needed.
- Because there is no cure for KTS — and it’s a progressive condition — we believe that treating your child’s symptoms is the most effective way to manage the disease.
How Boston Children's Hospital approaches Klippel-Trenaunay syndrome
Here at Children’s Vascular Anomalies Center, we have the world’s largest database of children whose vascular tumors have caused Kasabach-Merritt phenomenon. When doctors anywhere in the world have questions about whether a child’s birthmark may be a vascular tumor that could lead to Kasabach-Merritt phenomenon, they often call us. Our physicians have treated more children with Kasabach-Merritt phenomenon than any other hospital in the world—which means that your child will get expert care from experienced physicians.
We specialize in innovative, family-centered care. From your first visit, you’ll work with a team of professionals who are committed to supporting all of your family’s physical and psychosocial needs.
Children with KTS sometimes have legs that are so large as to be debilitating, forcing them to use a wheelchair. Surgeons at Children's are leading the charge in removing the extra tissue that grows as a result of KTS. In a debulking procedure, our surgeons remove a great deal of the extra tissue, which can allow your child to regain function of her leg. Read more about our treatment.
Klippel-Trenaunay syndrome: Reviewed by Arin Greene, MD, MMSc.
© Children’s Hospital Boston, 2010