Did you know today is World AIDS Day? Thanks to the many different organizations (including those like AIDS.gov) recognizing the day and raising awareness about HIV and AIDS.
Now a few years old, the PatientsLikeMe HIV community currently has more than 2,800 people with HIV sharing their health information to help others learn from their experiences. In honor of today, here’s a snapshot of what patients like you are sharing and learning about in this community.
DID YOU ALSO KNOW…
- You can all find patients like you by searching by CD4 count, viral load, years since infection and more.
- In a PatientsLikeMe research study published in the Journal of Medical Internet Research, we revealed:
- 63% of HIV community members on PatientsLikeMe agreed they had better understanding of the consequences of taking a “drug holiday” after using our site
- 23% agreed they had decided to start therapy or counseling after interacting with others on the site
- 29% agreed PatientsLikeMe had helped them decide to start taking antiretroviral drugs
- PatientsLikeMe research scientist Mike Massagli spoke earlier this year in a PatientsLikeMeOnCallTM podcast interview about the benefits of measuring your quality of life. How’s your quality of life been recently? You can measure yours too.
How are our members treating their condition?
- Members in the HIV community are using more than 793 treatments, including prescription drugs, supplements, over-the-counter medications, life-style modifications, therapies, and more.
- The top lifestyle modifications reported by our patients includes avoiding alcohol, diet and exercise and stop smoking.
- The most widely used antiviral drugs (or cocktails) reported by members are Atripla, Truvada and Norvir; the top 3 supplements are Multivitamins, Omega 3 Fish Oil and Vitamin C.
What are their major symptoms?
What are they talking about?
- Some of the top topics “tagged” in our forum discussions to date include blood counts, support groups, relationships, newly diagnosed patients and side effects.
- Filed Under: HIV/AIDS
- Tags: aids, AIDS.gov, antiretroviral, antiviral, Atripla, drug cocktail, drug holiday, HIV/AIDS, mike massagli, Norvir, PatientsLikeMe, PatientsLikeMeOnCall, quality of life, Truvada, world aids day
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.
- Filed Under: HIV/AIDS, Patient Experiences, Research
- Tags: AIDS.gov, Atripla, BrightonBear, Coconut macroons, dealing with new diagosis, Facing AIDS, HIV/AIDS, long-term diagnosed, newly diagnosed, online community, PatientsLikeMe, peripheral neuropathy, real-world health data, relationships and living with AIDS, Ritonavir, side effects HIV, Truvada, WAD09, world aids day