I’m Not Living a Life That I Should be Living

“I can’t stress enough how devastating lipodystrophy is and how much your life changes because of it.”

Mark forces himself to leave his Boston apartment each day, just to visit Dunkin’ Donuts.  He knows it’s unhealthy to live like a recluse, but the 10-minute walk feels like a 10-mile journey because of the way people react to Mark’s appearance: a construction worker near the Filene’s building …

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I Don’t Want Anybody to See Me

“I just figured that I wasn’t going to get it. I just gave up.”

John Wallace only leaves his home to buy groceries or pick up his medications. The once outgoing Vietnam-era Marine veteran now passes most of his days alone, watching TV in his South Boston apartment. His partner of 15 years passed away a decade ago.

“I don’t want anybody to see me,” says the 64-year-old.

What John doesn’t want …

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Fighting for Treatment

Most people suffering from lipodystrophy don’t have the financial resources or provider support to successfully appeal an insurer’s denial of treatment.

George Hastie had the worst case of buffalo hump his surgeon had ever seen, a hump that had caused permanent physical damage to George’s back. Yet, in December of 2006, Tufts Health Plan denied prior approval for surgery on the grounds that …

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A Walking Advertisement for HIV

We have the means to make it easier for people to truly live, and I mean live with a capital L, with HIV. Let’s make that happen.

Andrew Fullem, Director of the Center for HIV at John Snow Inc., has been living with HIV for 17 years. While Andrew now enjoys life, there was a time when he avoided looking at his reflection whenever possible.

Andrew was part of early randomized clinical HIV drug …

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People Look at Me and Say ‘HIV’

“How can you deny this when all these facts are in front of you?”

Bob is a long-term survivor of HIV who was diagnosed in 1990. He has also twice battled cancer and won. But some of Bob’s most challenging moments have come from his struggle with lipodystrophy.

Bob began experiencing lipodystrophy in the 1990s, when “fat just started redistributing itself in my body. It became profoundly …

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A Three Year Battle for Medical Treatment

“You want to give up and I guess maybe that’s the point – they want you to give up. But I can’t.”

In November of 2012, Jean Marcoccio had surgery to remove the large buffalo hump on the back of her neck, alleviating the chronic headaches and sleeplessness that plagued her for years. She’s more physically comfortable and also less self-conscious about her appearance out in public. MassHealth, …

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A Life Curtailed

“I used to be a very social, very outgoing, active person. And now I find myself just isolating because of the lipodystrophy.”

“It’s a win-lose situation for me,” says Joe Clement of the HIV medication the keeps him alive. The extreme side effects cause what Joe calls “this ‘morphed image’ when I look at myself in the mirror. I can’t stand it.”

For 16 years, the 57-year-old artist has been …

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Living in Constant Fear

“I lived in constant fear that the lipodystrophy would identify me as HIV-positive.”

In 1994, at the age of 26, Amit Dixit was diagnosed with advanced AIDS.  At the time, his father did not want to tell anyone in their South Asian community.  He feared that AIDS would be a mark on his family and would make it more difficult for other family members to get married.

Fortunately, Amit received …

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A Simple, Life Changing Procedure

“The day my buffalo hump was removed through a simple liposuction procedure was life changing. I got instant relief.  It was like I was normal again.”

Michael Achille, a resident of South Orleans, Massachusetts, began developing severe lipodystrophy in 2001-2002 as a result of his HIV medication.

Michael’s lipodystrophy manifested itself as a buffalo hump, a fat pad on the back of his neck …

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