At Children’s Hospital Boston, we know how difficult a diagnosis of Parkes Weber syndrome (PWS) 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:
- PWS is a rare congenital (present at birth) condition that results in your child having a large number of abnormal blood vessels.
- It’s very similar to the more common Klippel-Trenaunay syndrome and is treated in much the same way.
- In contrast to children who have Klippel-Trenaunay syndrome, kids with PWS have arteriovenous malformations that can cause heart failure.
- Possible complications of PWS include:
- swelling and overgrowth of one of your child’s limbs (usually a leg)
- bleeding from the capillary malformation (sometimes called a “port-wine stain”), which is a flat, warm, pinkish stain that appears at birth and typically covers a large area
- the large amount of blood flowing to the affected limb can wear out your child’s heart.
How Boston Children's Hospital approaches Parkes Weber syndrome
Here at Children’s Vascular Anomalies Center, we have the world’s largest database of children whose vascular tumors have caused Parkes Weber syndrome. When doctors anywhere in the world have questions about whether a child’s birthmark may be a vascular tumor that could lead to Parkes Weber syndrome, they often call us. Our physicians have treated more children with Parkes Weber syndrome 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.
Surgeons at Children's are leading the charge in removing the extra tissue that grows as a result of PWS. Children with PWS sometimes have legs that are so large as to be debilitating, forcing them to use a wheelchair. 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 here.
| A young woman shares her story
Read and watch a video of one patient’s inspiring story about her struggle with a condition similar to PWS, called Klippel-Trenaunay syndrome.
Parkes Weber syndrome: Reviewed by Arin Greene, MD, MMSc.
© Children’s Hospital Boston, 2010