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« on: May 12, 2007, 07:42:09 pm »


Heather Steinhoff



Heather Steinhoff has always been the active type.

A third-generation dancer, she first performed on stage at age 2 and began teaching the art at 15. She also loves the outdoors, whether it be boating, hiking, fishing, camping, hunting or yard work.


And as the only daughter of an only child, Heather has always dreamed of having a baby to keep her family’s bloodlines going.

But none of these things are possible any more.

Lupus, a debilitating and often fatal autoimmune disorder that affects one in 4,000 Americans, has gradually swept them away.

“It’s like every time I turn around, something I love, I can’t do it anymore,” said Heather, 30.

To make matters worse, she has been unable to get proper medical care because she doesn’t have health insurance.

And despite her inability to work, she repeatedly has been denied Social Security Disability Insurance, and she can’t afford to pay a lawyer to help fight for them. Her latest denial came on Wednesday, May 9.

Fortunately, the Dallas LGBT community is stepping in to help. Buddies II, at 2025 Maple Ave. in Dallas, will host a benefit show and auction for Heather at 10:30 p.m. on Saturday, May 19.

“I had to really talk myself into this, because I have never been one to ask for help,” Steinhoff said. “It is wonderful how everybody is so loving and caring and compassionate.”

‘In God’s hands’

Cindy Steinhoff first started noticing signs of her daughter’s Lupus in 1999, when a classic “butterfly” rash associated with the disease began appearing on her face after she spent time in the sun.

But it wasn’t until six years later that Heather was properly diagnosed.

In people with Lupus, for which there is no cure, the immune system attacks healthy tissues and cells, damaging things like the nervous system, the kidneys, joints, the heart and the skin. Its cause is unknown. Lupus affects 270,000 to 1.5 million people in the U.S., and more than 5 million worldwide. Women are diagnosed with Lupus nine times more often than men.

Gradually, Heather’s symptoms have progressed to include things like extreme fatigue, migraine headaches, severe joint pain, shortness of breath, irritability, memory loss, depression and anxiety.

After being diagnosed with Lupus in 2005, Heather is currently in a “flare” — meaning the disease is out of remission — since December. As of Tuesday, May 8, she had been hospitalized twice within a week for breathing problems.

Combined with a back injury she sustained in 2001, Lupus has meant the end of her dancing career and her hopes of becoming a mother.

“I’m still angry,” she said of her circumstances. “I’m not past that yet.”

Due to medical advances, 90 percent of Lupus patients live for more than 10 years. But because Heather had her spleen removed in 1996 due to an unrelated condition, she will have to forgo two of the most effective treatments — steroids and radiation.

Still, she needs medication and regular blood tests that she can’t afford. She needs to see a rheumatologist, an oncologist and a dermatologist. But due to financial constraints, she currently is seeing only a general practitioner.

Medical expenses have led to repossession of her car and destruction of her credit. Mom Cindy has also exhausted her savings.

The Steinhoffs have fought bitterly, but unsuccessfully, for years to get Heather on SSDI. The latest disappointment came on Wednesday, May 9, when she was once again denied. She said she was told she does not qualify because she is single and has no children.

“I don’t have a lawyer to help me,” she said. “I can’t afford to pay a lawyer.”

Even if she is successful in obtaining SSDI, Heather won’t be eligible for medical assistance for another two years. She will instead receive only monthly income checks.

Still, her mother says, even those would be a help.

“Some days she lies in bed because it hurts to walk and [she] cries some days because she cannot brush her hair,” Cindy wrote in a recent letter pleading with SSDI officials.

“It’s so sad to feel so helpless and to know there is nothing to be done to help her at all. Prayer is the best, and it’s in God’s hands,” she wrote.

‘A very emotional night’

Buddies II is a fitting venue for a benefit for Heather.

Although the Steinhoffs moved to Farmersville in 2002, they have a long history in the community.

Heather said she’s known people like the late Sandy Meyers, who started Buddies, and Meyer’s longtime partner and current owner, Dawn Jackson, since her mother started going there decades ago.

“Most of the people have known me since I was a baby,” she said. “I feel like they’re all family to me.”

Cindy said she worked as show director at Buddies for several years, putting on similar benefits for AIDS charities and other groups.

“Whatever anybody needed, I was always right on top of it,” Cindy said. “I can’t tell you how much it means that we’re doing this show, and everyone coming together out of the woodwork — people I haven’t seen in years.”

Jackson, who recently approached Cindy about doing the benefit, said Heather “was basically raised at Buddies.”

“She’s just a sweet little girl, and they’ve had the hardest time because she can’t afford to get any help,” Jackson said.

Jackson said she hopes the benefit will raise as much money as an event held at her club on Sunday, May 6 for Mable Peabody’s Beauty Parlor and Chainsaw Repair, the gay bar that burned in Denton. That event brought in nearly $10,000.

“I can only hope that as many people come out to support this,” she said. “We all need help once in a while, and we need to support each other.”

Jackson said she has lined up some performers and auction items for the benefit, but others who wish to perform or donate can still call Buddies II at 214-526-0887.

Despite her failing health, Heather said she plans to attend.

“Even if I have to come in a wheelchair, I’m going to be there,” she said. “It is going to be a very emotional night.”

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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
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