Rare group for a rare disease

LAKE STEVENS – For 42 years, Mignonne Walstad has shared her body with a “spider web.”

She was born with a red-purple birthmark on her left leg consisting of dense, swollen blood vessels under the skin. The birthmark has caused Walstad to go through many ordeals.

When she was a child, other children made fun of her. “I was different, and I didn’t want to be different,” she said. “I wanted to fit in.”

She wore long skirts, dresses and loose pants to hide the mark. Blue jeans would have been too tight for her leg.

The birthmark kept her from playing sports, since she couldn’t run. She tired easily, and even activities such as walking would wear her out.

When she turned 11, the birthmark was diagnosed as Klippel-Trenaunay syndrome, a rare congenital malformation. She didn’t know anyone in a similar situation, and the diagnosis made her feel alone.

But Walstad was surrounded Saturday by others who also suffer from the disease as she hosted the first meeting of a Klippel-Trenaunay Support Group in the Northwest, drawing about 30 people to her home, mostly relatives of those who are afflicted.

Walstad said she learned of the group in a newspaper article about disabled golfer Casey Martin, who had a similar condition and won a U.S. Supreme Court decision in 2001 to use a golf cart to ride in tournaments.

The support group, headquartered in Rochester, Minn., home of the Mayo Clinic, allows its members to socialize and exchange information about treatments and resources, Walstad said.

“It does help you if you know as much as you can, what’s happening” in your body, said Roberta Meisch, of Bothell, one of the guests.

Although some studies have been done, the cause of the genetic disorder is unknown, Meisch said. In fact, few doctors even know of any effective treatments.

“They just watched me my whole life,” said Meisch, 55.

The syndrome affects each individual differently, making it difficult for doctors to develop uniform treatments, she said.

Meisch has used a wheelchair for about three years because her legs swelled as a result of the disease and she could no longer walk.

“Now I’m starting to lose the feel of my feet,” she said.

Because of Meisch’s disability, her husband, Skip Meisch, helps as much as he can around the house, including doing most of the cooking. “We work together a lot. I help her a lot,” he said.

The support group has been a big psychological prop for the couple, Skip Meisch said. “It’s really encouraging that she can get the support she needs,” he said.

The disease is excruciating, said Walstad, the mother of four children. She went through six surgeries to have overgrown vascular veins taken out of her leg. When she had to undertake the seventh surgery in January 2003, she asked to have the leg amputated.

“I wanted the pain to go away; I wanted the sickness to go away,” she said.

But her doctor told her that removing her leg would threaten her life, Walstad said. The spider web of veins on her leg had grown upward in her body until it entangled her stomach, the doctor told her.

Eventually, she underwent a successful surgery without amputation. Today, she’s grateful to be alive, even if she wasn’t able to eliminate the diseased portions of her body.

“It’s incredible to be here,” she said of how she recovered from the surgery. “It’s truly a miracle that I’m here.”

Reporter Yoshiaki Nohara: 425-339-3029 or ynohara@heraldnet.com.

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