Last week end before I could even begin to recover from my brain squeezing in Vienna I was squeezed even further by participating in a 2 days training on HIV and your body organized by GILEAD.
What made the training bearable was that it was held in the marvelous city of Barcelona. Community activists from all over Europe were invited to participate and it was great for me to network with more positive European women who I hope I can get involved in chairing and speaking at sessions in Vienna 2010.
The training was very well run with equal contribution from HIV+ activists and doctors. I had a bit of a clash with an Italian doctor (I will not name names….) He was the typical Italian professor pompous and patronizing. What made me furious was that he kept saying that Lipodystrophy is reversible: ’You need a plastic surgeon….a good plastic surgeon, a personal trainer, and a nutritionist…’. I am a typical Italian woman and I exploded! I told him that I thought it was unfair to say to people that Lipo (as we call it, maybe to make it sound less scary) is reversible…It may be preventable…But I know plenty of people who took the early HIV drugs (the ones which are most associated with this side effect:D4t Ddi, Indinavir, AZT) and have since had plastic surgery, changed their diet, exercised…but can not reverse what has happened to their body shape…Saying that Lipodystrophy is reversible is setting people up for failure! And it will also exacerbate the guilty feelings often associated with having become infected with HIV (blame blame blame goes in our head and around us)… And I would also like to add that one of the greatest problems for PLHIV (people living with HIV) in the UK is poverty….Let alone finding a good plastic surgeon!
Anyway my big mouth is now well known Europe wide…Sometimes it is unbelievable to think that the first year I used to go to support groups I hardly dared to speak…
If you are not worried about getting depressed on how your HIV is affecting, your heart, liver, kidney, bones, and body shape check the HIV and your body website. It is also gives lists of useful questions to ask your doctor in order to have those organs checked properly.
One thing was clear to me by the end of the training: CD4 count and Viral Load are not the only medical exams we should worry about anymore. We have to worry about cholesterol, triglycerides, cardiovascular risk, mineral levels, osteoporosis, and much more As scientists expand their understanding about the long term effects of HIV and medications the management of our health is getting exceedingly complex.
I really worry how people are going to cope with living with all of this without the appropriate level of support, while organizations by and for people living with HIV in Europe are not strong enough.