Local effort to fund research on tumor growing genetic disorder - Boston News, Weather, Sports | FOX 25 | MyFoxBoston

Local effort to fund research on tumor growing genetic disorder

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(WJBK) - A local woman says she has finally gained the strength to accept a medical condition that has caused tumors to grow all over her body.

Allison Lejzorowicz barely recognizes the flawless skin she sees in her childhood pictures. A slightly visible tumor on her face in her high school picture would foreshadow the lifelong health battle she would have to fight.

Now, at age 34, she's covered with countless tumors.

She says the tumors cover her whole body, including stomach back and her chest.

It's called neurofibromatosis, a genetic disorder that causes noncancerous tumors to grow anywhere, anytime. Life with neurofibromatosis means cruel stares but Lejzorowicz wishes for considerate conversation.

"I guess I want people to say, 'Hey, I see you have bumps on you. What is that? Can you tell me about it?' I'd like people to ask and want to be educated rather than give careless stares or shun their children away because they don't want their children don't want to catch it," says Lejzorowicz.

Just recently diagnosed is 4-year-old Clara. The Florida girl has no visible tumors yet but when telltale brown spots showed up on her skin it lead to an NF diagnosis. Suzanne Saikalis of West Bloomfield is Clara's aunt.

"We'd never heard of it; my sister never heard of it. Both my sister and her husband were tested and they don't have NF," Saikalis says.

Neurofibromatosis affects one in 2,500 births. It's one of the most common genetic disorders.

The tumors can cause harm to internal organs.

About half the time, something triggers a spontaneous gene mutation while the other half the time it's inherited from a parent.

Both of Lejzorowicz's daughters have appeared to have inherited it.

"I looked at her back and I saw the first spots appearing and I just knew and my heart sank," Lejzorowicz says.

Now, the the race is on for a cure.

That's why shortly after her niece's diagnosis, Lejzorowicz started the Great Steps for NF fundraising walk in West Bloomfield.

"Not only are we raising money for research but we're pulling people together, increasing awareness, and for people living with NF it's a great opportunity to see the support that people really do care," says Saikalis.

These days Lejzorowicz has the strength to smile way more than she cries and has learned to feel comfortable in her own skin.

"Sometimes it's frustrating you say, 'Oh, why do I have another bump?' but I just have to roll with it," she says.

The Great Steps for NF Walk is happening at West Bloomfield High School on Orchard Lake Road Saturday, June 21, at 9:30 a.m.

Every penny raised goes to research.

LINKS
For more information on NF: www.nfsupport.org


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