Neuropathy Awareness Week is May 13^th-17^th and The Neuropathy Association has dedicated a page of its website to those who are getting involved. You’ll find images of people who are helping raise awareness at events all over the country. They’ve also created a list of upcoming events including a walk-a-thon and live Facebook chat.

Close to 20 million Americans live with this peripheral nerve disorder and while it’s most common among adults, it can start at any age. It’s frequently misdiagnosed or dismissed as a side effect of another disease like diabetes. In fact, 30% develop from an unknown cause, called ‘idiopathic.’[1]

If you’re living with peripheral neuropathy, find others just like you in our growing community of almost 1,500 neuropathy patients on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forum.

Stresam is an international brand of etifoxine, a non-benzodiazepine anxiolytic (anti-anxiety) and anticonvulsant drug.  It is used to treat anxiety disorders – such as general anxiety disorder (GAD) or social anxiety disorder or panic disorder – and to promote peripheral nerve healing in patients with peripheral neuropathy.

At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with conditions, symptoms, treatments and more, two patients report using Stresam currently while two patients report discontinuing it.  The reported reasons for taking it include anxious mood, shortness of breath and heart palpitations, while the one reported reason for discontinuation is that “the course of treatment ended.”  Out of all four patients, only one reports Stresam side effects, rated as “mild.”

Given the prevalence of anxiety disorders, we know there are many others who may have tried Stresam to relieve their anxiousness.  If you’ve used Stresam, another formulation of etifoxine or other anti-anxiety medications, we encourage you to share your experiences (including side effects) to help other patients.  PatientsLikeMe’s unique data-sharing platform allows you to share detailed data about all types of treatments, interventions and lifestyle modifications that have helped you or simply had no effect.

JOIN PATIENTSLIKEME TODAY

Have you taken Stresam – or another brand of etifoxine?  Join PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay to exchange advice and support, research common treatments and learn from other patients like you.

Every December 1^st, 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.