Vitiligo is an autoimmune skin disease that affects about 2 million Americans.
DETROIT — Adil Siddiqui was reluctant to go out in public because he thought everybody was staring at the patches of white skin on his face.
Siddiqui suffers from vitiligo, an autoimmune skin disease that affects about 2 million Americans. The white patches appear when pigment cells, called melanocytes, are attacked and destroyed by the body’s immune system. T he reason is a mystery.
The white patches, which are called lesions, developed after Siddiqui graduated from Novi High School in 2006.
“It’s an awkward stage when you are that age,” said Siddiqui, 23, of Canton Township, Mich. “I was just getting over acne. It was not cool.”
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One of the white spots was under his lower lip on the left side of his face. There was another white patch to the right of his mouth.
“I’m not naturally an outgoing person,” he said. “I was even more reserved and less self-confident after I developed the lesions. I was always worried that people were looking and me and thinking, ‘What the heck happened to this guy?’
“It was disconcerting to me mentally.”
The color on Siddiqui’s face has returned and the patches of white are almost all gone since he underwent skin transplant surgery at the Vitiligo Treatment Center, a unit of the Multicultural Dermatology Center of Henry Ford Hospital’s Department of Dermatology.
Siddiqui had two procedures. The first was performed in summer 2007, but the area right below his mouth didn’t come back with color. So he repeated the treatment about eight months later. Now, he’s thrilled with the results.
“It’s been a tremendous success,” he said. He developed more confidence after the surgery: “It’s no longer a distraction for me. That’s the greatest gift that it has given me. I don’t have to be self-conscious. I feel as normal as I’ve ever felt.”
Henry Ford is the only hospital in the U.S. that offers the transplant surgery, according to Iltefat Hamzavi, a senior staff physician in Henry Ford’s Department of Dermatology.
The surgery is known as melanocyte-keratinocyte transplantation or MKTP.
Henry Ford doctors learned how to do the transplant surgery after collaborating with experts in India and Saudi Arabia.
“We showed them some of our techniques,” Hamzavi said. “We showed them how to do photo therapy. They started showing some of their surgical techniques. Then we had to modify the techniques to U.S. standards. Over a two-year period of time, we were able to work out some of the kinks, bring it up to U.S. standards and start offering it.”
Other hospitals around the country now are rushing to learn the techniques, he said.
“The surgery is an advance, and it’s a cure for some people,” Hamzavi said. “We don’t want a young man or woman, who is 22 years old, crying in (the doctor’s) office knowing they are so disfigured by this disease. Psychologically, it can be devastating. You hate seeing people suffer.”
Several other treatment options can bring the color back, including light therapy and steroid creams. But not all treatments work the same on everybody.
“You want to treat vitiligo as a two-step process,” Hamzavi said. “You want to calm the immune system down, and then you want to bring the color back.”
Vitiligo usually first appears on people in their 20s.
“It’s hard to predict,” Hamzavi said. “Some people progress rapidly and some have a slow progression. … Once you have it, it’s a chronic disease.”
Vitiligo may be more prevalent in some Arab populations and South Asian populations. “In India, it’s as high as 6 percent in some studies,” Hamzavi said. “In Saudi Arabia, they are thinking it’s as high as 5 percent to 6 percent. In the U.S., it’s closer to 1 percent.
“We don’t totally understand it,” Hamzavi said. “We believe there is a short circuit due to genetics or due to an environmental cause or infection that causes the immune system to start thinking the melanocytes are a foreign object like an infection. So they attack the melanocytes and they are eliminated.”
Doctors at Henry Ford have performed the transplant surgery more than 100 times.
The skin is usually harvested from the upper thigh.
“You basically take skin cells, which are a paper-like material, and you convert it into a solution,” Hamzavi said.
The solution is put in a syringe and sprayed onto the white patches. “There is an art to it,” Hamzavi said. “As long as those skin cells stay there for 24 hours, they become part of the skin in that area.”
The procedure typically lasts between 30 minutes and 2 hours. Patients may return home the same day.
Skin transplant surgery works best for patients who have segmental vitiligo.
“If the vitiligo is in a small area or only on one side of the body, that’s segmental,” Hamzavi said. “If you have little spots all over your body, the transplant won’t respond.”
The surgery costs about $4,000, and is not covered by insurance. “Not right now,” Hamzavi said. “Some insurance companies are looking at it. It was very hard to do the research, offer the care and also fight the insurance companies. We will leave that to other people.”
MORE ON VITILIGO
Q: What is vitiligo?
A: Vitiligo, which affects about 2 million Americans, is a skin disease that causes patients to develop white lesions that vary in size and location. The lesions occur when pigment cells (melanocytes) are destroyed and pigment (melanin) cannot be produced. In 1993, Michael Jackson told Oprah Winfrey that he had vitiligo.
In 2005, Lee Thomas, a reporter for WJBK-TV (Channel 2), reported on his own skin condition. His memoir about life with vitiligo, “Turning White” (Momentum Books, $11.21) was published in 2007.
Q: What treatments are available?
A: There are two broad approaches. Doctors may try to restore the normal pigment, which is called repigmentation therapy, or they may try to destroy the remaining pigment cells, called depigmentation therapy.
Q: How are people with vitiligo affected by the disease?
A: Many people with vitiligo have low self-esteem, feel depressed, stigmatized and, sometimes, rejected by others. The majority of patients report being worried, anxious or concerned about the disease and how it interferes with their lives. In addition, one third of vitiligo patients say the disease has interfered with their personal relationships and sex lives.
Q: How do people cope?
A: Approximately 20 percent actively cope with their feelings and learn more about the disease. Another 40 percent of patients accept the disease, but ignore the lesions and do not make an effort hide the lesions or to learn more about vitiligo. The final 40 percent of patients are chronically embarrassed by the disease, go to great lengths to hide the lesions and withdraw from social interaction.
Source: National Vitiligo Foundation