The Positive Side

Fall/Winter 2003 

The Lipo Files: In Your Face

Wayne Stump on life after lipo.

IT WASN’T UNTIL I SAW MYSELF ON TV that I finally acknowledged what was happening to me. About three years ago a reporter interviewed me about a neighbourhood issue. When I tuned in to the newscast, I was dismayed at how gaunt my face appeared — I looked twice my age. At first I thought it was the harshness of the video medium. But when I compared my driver’s license photos taken in 1996 and 2000, the evidence of my progressive facial wasting was undeniable. I had the “HIV look.” At that moment, I was forced to confront the distressing reality of the body shape changes that often accompany “successful” HIV therapy.

Other people also noticed the changes to my face. Some well-meaning neighbours to whom I hadn’t disclosed my HIV status expressed concern that I looked unwell. Some fellow PHAs were more direct and urged me to consider what the drugs were doing to my body and not just my viral load and CD4 cell counts — the more successful aspects of my therapy. While I appreciated their kind motives, I felt like running away and hiding myself from the world. As someone used to being considered generally attractive, I’d always enjoyed the attention and opportunities for intimate contact that flow from being noticed. Now people were noticing me… but for all the wrong reasons.

In addition to facial wasting, I’ve experienced some other symptoms of lipodystrophy. My arms and legs have lost fat and I have elevated cholesterol and triglycerides, which is being managed with medications.

Although medical science has established that highly active antiretroviral therapy (HAART) probably plays a role in lipo, in my case quitting HAART in order to stop or reverse these changes wouldn’t be a good idea. Diagnosed with HIV in 1989, I’ve received unquestionable benefit from antiretroviral therapy. Had I not started HAART when I did in the course of my disease, I most likely would have a diminished quality of life, suffered life-threatening infections and possibly died. So, to continue receiving therapeutic benefit, I keep taking the drugs, accepting that adverse outcomes may be the price for antiviral success. No drug is perfect, but I am hoping that better therapies are in the pipeline.

In the case of skinny limbs, one can cover up with long-sleeved shirts and pants. With a big belly, one can artfully disguise it with baggy clothing. But how do you mask or hide the effects of lipo when it’s written all over your face?

Amazingly, implants of fat or fat substitutes, such as collagen, can be used to fill sunken cheeks. However, such procedures can be costly, may only work for short periods and may include some risk. I’ve chosen instead to live by the words on a plaque from my childhood home: “God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the knowledge to know the difference.” This little bit of wisdom has helped see me through this challenge.

 

LET’S FACE IT, everybody’s physical appearance inevitably changes with aging, but this usually occurs over decades, not months, so people gradually get used to it. One of the harshest realities of lipodystrophy is the sudden onset of the changes. The mental adjustment has been formidable. I’m amazed at the journey I’ve taken in learning to live with lipo.

Our personal appearance influences to some degree many aspects of our lives — everything from employment prospects to dating and other social opportunities. As a gay man, I’m aware of a subculture that seems, on the surface at least, to place a great deal of importance on physical appearance. Just pick up any gay newspaper or magazine and look at the ads…

The changes in my appearance have most definitely had an impact on my intimate life. (Let’s just say I no longer get as many phone numbers.) This has been a grievous loss for me; it certainly is one of the more challenging things I’ve had to deal with. However, it’s taught me to savour and appreciate other pleasures in life. I’m grateful for the diversity of intimate and sexual experiences I’ve enjoyed and I don’t consider myself by any means “underprivileged” in this area. Some guys still find me attractive and I take advantage of opportunities when they arise!

One of the lessons I’ve been forced to learn about myself is that I’m more than just a pretty — or not-so-pretty — face. I’m a whole human being with an abundance of good things to contribute to this world. I keep this thought topmost in my mind as I carry out my daily activities. I’ve discovered that humans are very adaptable in the face of adversity. I think this experience has made me a generally more compassionate person. I hate to use a cliché, but when life hands you a lemon, make lemonade.

I lost my younger brother to AIDS in 1994, before HAART became available. I know that in his last months of life his appearance was the least of his worries. I don’t understand why I was spared the calamity that he suffered. But it does make me even more appreciative of my survival and the quality of life I enjoy.

For more info on lipo, see CATIE's Practical Guide to HIV Drug Side Effects.

Wayne Stump has been a volunteer at CATIE for seven years and won the Volunteer of the Year Award in 2002.

Photo: RonniLyn Pustil

Lipo Service

One advantage among many of being a volunteer at CATIE is that I have access to resources to keep myself informed about HIV. As a result, I've learned a lot about what medical science knows — and, perhaps more importantly, what it doesn't know — about the possible causes of lipodystrophy.

Lipodystrophy means an abnormal change of fat. It usually shows up as changes in body shape that are sometimes accompanied by changes in blood fat and sugar levels.

Lipodystrophy may include such physical symptoms as:

  • fat accumulation — increased fat around the stomach and waist; enlarged breasts (especially in women); build-up of fat at the base of the neck ("buffalo hump")
  • fat wasting — loss of fat in the arms and legs, hips, butt or face

Lipo may also include the following laboratory test results:

  • elevated lipids (fat) — increased levels of triglycerides and cholesterol in the blood, which can lead to increased risk of heart disease
  • insulin resistance—a condition in which the body becomes less sensitive to the hormone insulin (which is used by the body to help maintain blood sugar levels). This results in higher-than-normal levels of blood sugar and, over time, increases the risk of diabetes.

Some people may have one symptom and others may have several. Because nobody understands exactly what causes lipo and why it happens, doctors don't know how to prevent it or reverse it.

Because lipo was first noticed in the mid-1990s, after protease inhibitors (PIs) came into widespread use, much of the blame for this syndrome has been placed on anti-HIV drugs. Not only PIs but also some nucleoside analogue drugs (nukes), particularly d4T (Zerit), have been strongly associated with fat wasting.

Other lipo risk factors include:

  • how long you've had HIV and how severe your disease is
  • how long you've been on anti-HIV therapy
  • age over 40
  • race (Caucasians are at greater risk)
  • increased body mass index (fat-to-muscle ratio)
  • genetic predisposition