Every December 1st, we join hands with the HIV community at large in recognition of World AIDS Day.
The theme of World AIDS Day this year is leadership — a fitting theme for the 2500+ patients who are leading the way through openness in the PatientsLikeMe HIV community. These leaders have chosen to share their health data and their personal stories of living with HIV, not only to manage their own disease, but also to help better the lives of others with HIV.
For 27 years, HIV/AIDS has been a global epidemic. Today, our online community has a few thousand patients whose experiences of living with HIV run the gamut – from the newly diagnosed to those who were infected long ago. Approximately 334 patients (or 12% of our community) indicate they were infected with HIV more than 20 years ago (such as BrightonBear, an early member who shared his story with us in this interview). Similarly, 84 patients indicate on their profiles that they have been living with AIDS for more than 15 years. All of these members have a lot to share – both through data and conversation – about how they continue to face the symptoms, treatments and side effects, and stigma of living HIV-positive. There are also members who are new to HIV, with 162 patients in our HIV Community indicating they were diagnosed less than 2 years ago. Our patients, both newly diagnosed and veterans in the HIV community, are true leaders – openly sharing their real-world health data and personal stories about living with HIV. Here are some interesting tidbits the community is sharing:
- How are patients like you evaluating the most popular treatments used for HIV? See what they say in our treatment reports about Atripla, Ritonavir, and Truvada.
- Ever heard of Coconut Macaroon Cookies used to “treat” HIV? A handful of PatientsLikeMe members cite it as a great way for patients to curb their diarrhea, a common side effect of their cocktails.
- That numbness in your hands and feet could be peripheral neuropathy, a common symptom in HIV. Patients are discussing treatments ranging from prescription drugs to lifestyle modifications to lessen the effects.
- Some of the most discussed topics patients in our forum include specific treatments (i.e., Atripla and Truvada) and side effects, common symptoms (like fatigue) and other quality of life issues like depression, relationships, dealing with a new diagnosis, and coping.
For the past two years, PatientsLikeMe has worked in cooperation with AIDS.gov, a government media program committed to improving the lives of patients with HIV. Check out their “Facing AIDS” photo campaign in honor of World AIDS Day.
Thank you to all of our members who continue to share and learn. It’s you who are leading the way.