We believe that the best way to live better is by sharing real-world health experiences with each other, and today, PatientsLikeMe and aids.gov are encouraging everyone to share their own stories with HIV and AIDS. The theme of this year’s World Aids Day is “Shared Responsibility: Strengthening Results for an AIDS-Free Generation,” and you can participate by reaching out and speaking with the global HIV/AIDS community.
If you’re wondering about HIV/AIDS, did you know that…
- Over 30 million people are living with HIV/AIDS worldwide, including over a million people in the United States1
- Many people with HIV don’t experience any symptoms until they progress toward AIDS, and as a result…1
- 1 in 5 Americans living with HIV/AIDS are unaware of their condition2
So, how can you do your part to raise awareness today (and beyond) and help people learn more about this condition? You can:
There are over 3,500 PatientsLikeMe members sharing their journey with HIV and AIDS in the community forums. Today, and every day, you can share your own story and help change the lives of others for good.
Here at PatientsLikeMe, we always look forward to hopping on the road and visiting you, the members who generously share personal health journeys so everyone can learn to live better, together. Recently, Molly (she’s part of your Community Team), Brad and Jim (part of our Partner Marketing team) drove north to Montreal to attend the World Parkinson’s Congress with a few PatientsLikeMe members, and they wanted to take a quick second to report back on the experience. Check it out.
Off to Montreal
The World Parkinson’s Congress is designed to create a worldwide dialogue to expedite a treatment or cure for Parkinson’s Disease. It was amazing to see physicians and scientists, alongside health care professionals and nonprofits, connecting with patients and caregivers. It was a wonderful conference, and we were glad to be among the more than 3,300 participants who gathered in Montreal.
We couldn’t have picked a better setting than Old Montreal to meet with four of our Parkinson’s community members – Aunti_J, Sap011235, Sunshine221, and Red Hat Queen. They all attended the conference and joined us for a wonderful dinner at Chez L’Epicier. The cobblestone streets, gorgeous historic buildings and an unseasonably warm evening set the scene for exquisite French cuisine with new friends.
But the setting couldn’t hold a candle to the experience of meeting PatientsLikeMe members in person. After reading their forum posts, answering their questions, and hearing about their experiences with Parkinson’s for well over a year on the website, I was eager to give them a big hug in real life. We talked travel, DBS, support groups, community walks, and perhaps most poignantly, how and why each person joined PatientsLikeMe. Aunti_J left us with this touching memory of how she found PatientsLikeMe:
“I had to retire from my work about 2 years after I was diagnosed and I really felt like I was going home to die. I spent an entire year feeling so depressed. Then I found PatientsLikeMe and within a half an hour, I felt like this weight was lifted off my shoulders. I felt like I found ‘me’ again.”
Aunti_J joined in 2008 and continues to be a warm and welcoming voice in the community for all Parkinson’s patients who are sharing their journey at PatientsLikeMe.
The goodbyes came too quickly, the hugs were worth more than the distances we all traveled to get to them, and when we returned to our “real” communities at home, and to our virtual family on PatientsLikeMe, we carried with us the realization that we truly do live better, together.