Backstreet Boy Dorough a hit with lupus sufferers
Source from: Celebrity Health Watch
By John
Morgan, Spotlight Health
With medical adviser Stephen A. Shoop, M.D.
The Backstreet Boys are one of the biggest-selling pop bands in music today, and once again they're nominated for a Grammy award. But for band member Howie Dorough the awards, platinum records, and fast lane are no longer the main focus of his life.
"A little over three years ago my sister Caroline died of lupus," says Dorough. "After the funeral, the band was supposed to do a big concert in South America. Everyone was telling me I should go, that Caroline would have wanted me to go because she loved our music and was so proud that I was doing what I loved."
So three hours after burying his sister, Dorough was on a flight to South America.
"And that's when it hit me - how fragile life is and I just lost it," he says. "I realized that we get so caught up in our jobs and forget about the important things. The Backstreet Boys don't matter at all if you don't have your health. Your health and your family are everything."
The long flight left Dorough with plenty of time to reflect on his sister's life and the pain he felt over her passing.
"There are five kids in my family. I'm the baby. My sister Caroline was 12 years older than me, so she was always my babysitter - we were very close," recalls Dorough. "Then Caroline came to us and told us she had lupus. Caroline just thought of it like diabetes, that it was something she had to deal with, but nothing was going to hold her back."
But after her first child was born the lupus got worse.
Despite the setback, Caroline still wanted to have another child. Two miscarriages followed. Her second child was born four months premature with cerebral palsy. And her lupus worsened.
The Call
Caroline's doctor had recommended more aggressive therapy, but she said she didn't want any drugs - she wanted a quality of life.
"Her choice is really hard for me because I know if she took the drugs she probably would have been around a lot longer. It's selfish, I guess, because you can't know how good her life would have been. And she loved life."
Dorough says his long flight to South America was made all the more difficult because he was unable to say goodbye to Caroline before she died.
"I've struggled with that a lot," admits Dorough. "It happened so fast. It was September of 1998. We were celebrating winning our first MTV award and my dad called my brother John to let him know Caroline was in the hospital. He told my brother not to tell me but I could tell something was wrong and I dragged it out of him."
Dorough told his tour manager that he was going to have to miss the next show and left immediately to be by Caroline's side.
"But I missed my flight by 10 minutes," says Dorough. "By the time I got to the hospital the doctor was trying to resuscitate her, but we lost her. I felt so terrible that I hadn't been able to say goodbye to her. I just couldn't stop thinking about missing that first flight."
In Caroline's honor, Dorough and his family started the Dorough Lupus Foundation to support lupus research and treatment throughout the world.
"We do fundraisers for local lupus organizations after a lot of our shows," says Dorough. "And for the second year I've done a charity cruise. We do karaoke night where you get to sing with me. I get to interact a lot with everybody, and it raises money for a great cause."
Today, Dorough is passionate about eradicating the disease that claimed his sister's life. Last year, Dorough presented lupus expert Dr. Bevra Hahn of UCLA with over $130,000 to continue her work toward better treatments and an eventual cure.
Larger than life
Lupus is a chronic, autoimmune disease that causes inflammation of the internal organs, blood, joints, and skin. The body's immune system incorrectly identifies its own cells as antigens and attacks them, causing pain, inflammation, and even death.
As many as 2 million Americans may be afflicted with lupus. Contrary to popular belief, nearly 90% can expect to live a normal lifespan. Women are 10-15 times more likely to develop lupus than men. African-American females are the most at risk and Caucasian women the least.
Researchers still do not know exactly what causes lupus, but several consortiums are working to identify the genes responsible.
"The research that appears most promising involves gene therapy that manipulates cytokines - proteins that either promote or protect the body from inflammation," reports Hahn, a professor of medicine at UCLA and its Chief of Rheumatology.
"The hope is that we will pinpoint the genes involved and be able to identify those at risk," says Dr. Daniel J. Wallace, clinical professor of medicine at UCLA and author of The Lupus Book.
But while lupus sufferers wait and hope for a cure, new treatments to improve their quality of life are finally emerging.
"There are essentially two forms of lupus - mild or severe," explains Wallace. "As patients with lupus are living longer, many are succumbing to the complications of the therapy, not the disease itself."
Experts say these complications are often caused by long-term use of high doses of corticosteroids like prednisone and chemotherapy to control the more severe form of the disease.
Last June the Food and Drug Administration (FDA) angered many lupus experts by denying approval for one of the more effective lupus treatments to emerge in recent years - dehydroepianderosterone (DHEA).
"DHEA clearly works for mild lupus," says Wallace. "It's primarily an androgenic (male) hormone and improves energy, cognitive function, inflammation, and is steroid sparing. The approval was halted by statisticians, and I just hope none of their kids have lupus."
"I think the high dose of 200 milligrams is helpful with mild to moderate lupus," agrees Hahn. "People need less corticosteroids and have fewer flares. There's less disease activity. But there's a caveat: Some people respond and some don't."
Ironically, despite the FDA's action, DHEA is a common item at health food stores across the USA. But Hahn and Wallace caution that lupus patients should take only DHEA prepared by a pharmacy, since consumer brands are considered a food supplement and are not regulated for purity and dosage.
Climbing the charts
New therapies for lupus hold great promise, including:
Biologics - A targeted therapy that kills the bad cells but leaves the good ones alone, LJP394, made by La Jolla Pharmaceuticals is in final testing. "I'm very enthusiastic about this treatment," says Hahn. "The preliminary data looked excellent and we're still enrolling patients in trials."
Immunoablative therapy - Patients who have severe lupus are given 10 times the normal dose of chemotherapy over four days, obliterating their bone marrow. They are then given back their stem cells to create a new immune system. Because this arduous process takes nearly two years, people must remain on a copious regimen of medications to prevent infection. But data indicates that those who respond have remained in remission for 2-3 years.
Whatever therapies emerge, Dorough says he intends to help fund a cure for lupus.
"This is definitely a personal mission - I am trying to educate myself and others about lupus so we can better understand this terrible disease. I would never want this to happen again to another family."
As Dorough arrives at his hotel, he suddenly stops talking. "I'm staring at the address - it's 1111 Caroline Street. Can you believe that? It makes sense - she always was my guardian angel and she still is."
