PatientsLikeMe Newsletter Issue 33 - January 2011


As we celebrate a brand new year, I’d like to spotlight the eclectic mix of patients who share much more than their health status with us day in and day out. 

Can you guess…

  • Who believes stubbornness is a virtue, and that it has helped him take control of his HIV?
  • Who feels her early 20s diagnosis helped focus her job search and inspire her current career path?
  • Who lives by the motto “Live, Laugh, Love” and relies on friends, family and coffee to fight the good fight?
  • Who battles both MS and HIV, and also has a red high-heeled pump as her profile picture? 

Thanks to all of you for sharing what’s important to you, what makes you feel alive and what makes you smile.  You never know how one small detail on your profile description could brighten someone else's day.

--Emma Willey, Community Manager


Check out some of the hot topics in the forum.  Then jump in with your own questions and answers!

Dealing with a shingles outbreak in my ear
46 of you report experiencing outbreaks of herpes zoster, an often-painful skin rash commonly known as shingles.  Discuss the frequency and severity of your outbreaks.  

My doctor is actually a registered nurse practioner (RNP)
Have you been treated by a RNP?  Is this appropriate for an HIV patient?  Share your thoughts with a patient who was startled to learn that he was not being seen by an MD.

Buddhism and HIV: what are your thoughts?
Do you believe that reducing mental stress is an essential part of your treatment?  Discuss Buddhism and how working to calm your mind could affect your physical health.


At PatientsLikeMe, we believe in getting to know the person, not just the “patient.”  That’s why we interview members each month to find out more about how they approach life.  This month we are pleased to feature irishtxn, a two-star member from Houston, Texas.

1.  What gives you hope?

Knowing that someday I'll be able to be with my boyfriend, and with some of the new breakthroughs coming about, we'll have a good long life together.

2.  What was the highlight of your holidays?

Being able to spend it with family.

3.  Do you have any goals or resolutions for 2011? 

To be a bit more tolerant of my mother, more patient with my boyfriend when he doesn't answer chat as quick as I'd like him to, and to be able to move out on my own again!

4.  What are you most interested in learning from other patients this year?

How to keep unwanted stress out of my life! It's hard enough being one of six siblings living in the same town, much less [being the one living] with our mother. I'm not getting any real support from them as I'd like.

My siblings do take care of my mother's prescription costs, but they rarely offer to come in and get my mother out for while. I might rephrase that [it would be nice] to ask her to their homes.  She rarely ventures away from the house unless it has something to do with the church.  Never gets to see the other children unless it is a holiday such as Christmas.


What a year!  To see how far we’ve come as a community, check out our latest blog series – “Year in Review” – which reflects on the strides we made in 2010 from a technology, marketing, research & development, business development and patient experience perspective. 

From site improvements to staff expansions to published studies, a lot happened last year, and it could not have happened without you.  What’s ahead in 2011?  Our leaders plan to tell all on our blog.  Sign up here to receive new blog posts instantly via email.  Or simply follow our blog posts on our Twitter and Facebook pages. 


We are constantly working to improve our site.  In this section, we’ll keep you up-to-date on new tools and features designed to make your PatientsLikeMe experience even better. 

Here are our top functionality enhancements for January:

  • Have you been hospitalized due to your condition?  Record it!  We’ve now added a new hospitalization chart to your profile, allowing you to enter your date of admittance, date of discharge and reason for hospitalization, including the main symptom involved.  That way, you can keep a detailed visual log of all of your hospitalizations at PatientsLikeMe.   Create your hospitalization chart today.
  • You asked, and we listened.  Due to your feedback, we’ve made it possible to stop monitoring certain conditions listed in your PatientsLikeMe history (for example, a condition that you had in the past but do not experience currently).  If you’d like to stop charting a condition – and thus stop receiving any reminders from us about it – simply indicate this at the bottom of your condition history
  • It’s all sorted out now.  Thanks to a recent upgrade, you can now put the charts on your profile page in any order you like.  Simply drag the charts to move them or use the number boxes provided to indicate your preferred order.  And you only have to do it once.  The site will remember your sorting preferences so that you see the same order every time you visit your profile page.  Learn more here.


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