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The debate is ongoing as to whether women
are at more risk for lipodystrophy syndrome than men. We do
know that women are more likely to experience increases in
breast size and overall weight gain than men. We also know
that fat loss in the face is more common for men than women.
Women who experience increase in breast size rarely find this
trait to be a good one. It is not like getting some rounded,
perfect implants. The gain in the breasts are usually as unpleasant
as the gain in the abdomen. The fat forms behind the muscles
around the organs and is not soft but rather hard and very
uncomfortable deposits.
What causes lipodystrophy? The cause is
multifactored. The current theories are as follows:
- Taking HIV drugs (while lipodystrophy
has been seen in people taking almost any type of HIV therapy,
there are theories that some protease inhibitors may be
involved in fat gain and certain nucleoside analogs may
be involved in fat loss).
- The length of time you are on HIV drugs
(approximately 10% of HIV-positive people develop fat redistribution
symptoms within the first two years of treatment).
- HIV disease itself (some HIV-positive
people who have body composition changes have never taken
HIV drugs).
What can I do about it?
The next question we ask is what can I
do about it? Will these changes in my body occur? Can I stop
them, slow them down or reverse them? I believe that it is
possible to make progress on this issue. I say this from my
own personal experience and from the current research out
there on ways to address lipodystrophy. (See “Managing
Metabolic Syndrome” on page 18 and “Diet and Lipodystrophy
on page 23) Everyone is different and may experience different
symptoms of lipodystrophy.
What we need to recognize and accept is
that women come in all shapes and sizes. We need to be realistic
about what our bodies look like. Remember that the average
American women is around 140 pounds and 5'4". I come
from an Italian family of wide hips, skinny legs and big butts.
Even if I work on shaping these body parts, there is always
my genetic build up that tells me, hey girl, be happy with
who you are. So that being said, we know that we may be able
to treat some of the metabolic complications such as increased
cholesterol, triglycerides or glucose levels by switching
HIV drugs or by taking lipid-lowering medications. The body
composition changes are harder to address. The following described
methods are currently being tested and researched:
A human growth hormone called Serostim
is currently being used to treat fat gain that is identified
as visceral adipose tissue (this is fat that surrounds the
organs rather than fat under the skin). It has been shown
to decrease excess fat buildup and increase lean body mass.
It also specifically responds to the abdominal fat and fat
pads on the back of the neck. It can, however cause fat loss
in the arms, legs or face.
An anti-diabetes drug called Metformin
has also demonstrated effectiveness in reducing abdominal
visceral fat and insulin resistance.
An experimental treatment using anabolic
steroids for the treatment of lipodystrophy is underway. Anabolic
steroids are currently used as a standard treatment for HIV
related wasting syndrome. Steroids may disguise the visible
signs of lipodystrophy rather than stop or reverse loss of
fat tissue.
Niacin is a B vitamin being used to treat
metabolic and fat disorders with some encouraging early results.
Recipients of this therapy have shown reductions in intra-abdominal
fat associated with an increase of good cholesterol called
HDL. There are many side affects associated with the high
dose of Niacin being administered and not everyone can tolerate
this method.
Liposuction, a cosmetic surgery procedure
can be used to remove fat from the back of the neck and around
the breasts. Liposuction cannot be used as a solution for
abdominal fat because this fat forms around the organs rather
than under the skin and the procedure is considered to be
too risky. Liposuction is usually just a temporary solution
and more expensive than most of us can afford.
Exercise and Diet
Here in America, we always want a quick
fix. Give me that pill to cure my weight problem, my cold,
my breast size or my sexual drive. Not everything is attainable
without some hard work, commitment and dedication. In 1999,
I was a pasty blob of 5'7" and 200 pounds. I was very
unhappy with my body and how I looked and felt. I would look
at myself in the morning and feel a sense of disbelief of
how I looked. My breasts were heavy and out of shape (not
the usual perky 36 B cup), my stomach was hard and resembled
a 6–7 month pregnancy stage (except that I knew that
would have to be the second time that immaculate conception
occurred) and my skin, nails and hair lacked luster and vitality.
I made a conscious decision to take control
of my life. I was determined to not allow this virus to run
rampantly through my body, destroying not only my physical
appearance but in addition my sense of humor, my confidence,
my love for life and my energy to tackle whatever was most
difficult. I made the decision to attack this virus and what
it had been doing to me physically and mentally since 1990.
If I could live through the death of a husband at 25 and watch
dozens of young friends suffer and die I could do this. It
was time that I started living again.
I am fortunate to have a very good gay
male friend, who resembles a Greek god. He supported me throughout
this process and helped by encouraging and teaching me what
I needed to know. I had been reading about exercise and nutrition
and its benefits. I was ready and motivated to start this
change in my life. I started by learning how the foods that
I put in my body react to my metabolism and the facts of how
I could balance my diet for life and gain back the person
I remembered from years ago. I began a workout regimen that
consisted of 3 days of resistance (weight) training per week,
which I performed with a set of rusty used weights on my coffee
table. I also began walking around my block, getting my heart
rate going for 20 minutes 3 times per week. I then began eating
5–6 small meals per day that consisted of a lean protein,
carbohydrate and a vegetable. I reduced the amount of saturated
fat and increased my intake of water. Within one week, I could
tell a difference in my energy level and how I was feeling
both physically and mentally.
Every Sunday I began making a big meal
consisting of anything and everything that I craved (pasta
with cream sauce, crunchy Italian bread and a rich sweet chocolate
cake) and inviting my friends over for dinner. After the meal
my friends got to take home all of the leftovers. I was careful
not to deprive myself of the cravings that I had and used
these Sunday dinners to satisfy those cravings. I noticed
that as I lost weight and became healthier these cravings
were reduced. I instead began to crave good healthy foods
like fresh vegetables and fruits.
Today, I continue to eat healthy, exercise
and weight train. My schedule consists of 3–5 days of
working out at the local YMCA. I still combine the cardio
and the resistance training. I eat healthy except for the
occasional downfall of chocolate or sweets. I lost a total
of 50 pounds and drastically changed the shape of my body.
That’s how I turned the beach ball on sticks into the
basketball on bats. The biggest change that I see is my attitude.
I am confident, more pleasant to be around and happier with
not just life but who I am. I know that I have the power and
confidence as a woman to succeed in this world. I feel and
look good, and most of all I will beat this pesky virus called
HIV!
HIV no longer means death. HIV no longer
means that as women you cannot have a relationship or children.
You can take control of HIV and what it does to you physically
and mentally. There are many ways to learn about how to take
care of your body and make changes or prevent these changes
from occurring. Talk to other HIV-positive women, get support,
speak with your doctor or consider attending an HIV and lipodystrophy
forum offered at many AIDS service organizations and conferences.
The Internet can be an excellent source of information for
new treatments that are on the horizon. If you are ready to
make changes and feel better then start off slow, at your
own pace. Remember that we are all different and HIV affects
each of us differently. Most of all find a way to be happy
with you.
Barbara Marcotte is a Treatment Education
Coordinator at Test Positive Aware Network.
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