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Genetic and Rare Diseases Information Center (GARD)

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Parkes Weber syndrome

Other Names for this Disease
  • Cutaneous flush with underlying multiple micro arteriovenous fistulas, soft tissue and skeletal hypertrophy of the affected limb
  • PKWS
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Your Question

Are there any effective treatments for this condition? I have lived with this condition for 25 years and only receive pain killers and antibiotics to manage pain and swelling.

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

How might Parkes Weber syndrome be treated?

For capillary malformations (such as port wine stains) that are of cosmetic concern, individuals may be referred to a dermatologist. For arteriovenous malformations (AVMs) and arteriovenous fistulas (AVFs), the risks and benefits of intervention (i,e, embolization versus surgery) may be considered, usually with input from a multi-disciplinary team (e.g., specialists in interventional radiology, neurosurgery, surgery, cardiology, and dermatology). For risks associated with heart failure, referral to a cardiologist may be warranted. Hypertrophy (overgrowth) of the limb and/or difference in size between limbs may be treated surgically by an orthopedist.[1]

Supportive care may include compression garments (tight-fitting pieces of clothing on the affected limb to reduce pain and swelling); these may also protect the limb from bumps and scrapes, which can cause bleeding. Heel inserts may be used if the legs are different lengths, which can aid in walking normally. Various pain medications and antibiotic medications may be prescribed as needed.[2]
Last updated: 6/9/2011