103 posts in the category “HIV/AIDS”

Coming together to recognize World Aids Day

Posted December 1st, 2013 by

World AIDS Day. December 1We 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.


1 http://aids.gov/hiv-aids-basics/hiv-aids-101/global-statistics/

2 http://aids.gov/hiv-aids-basics/hiv-aids-101/statistics/


Coping with Changes in Physical Appearance

Posted January 24th, 2013 by

When you are diagnosed with a life-changing illness, your doctor may prepare you for how the disease will affect your physical functions.  But as our members point out, patients also need to be prepared for the changes in physical appearance they may experience.  For example, how do you deal with hair loss, facial swelling, weight gain, blotchy skin or other unexpected changes?  Or get comfortable with the use of new equipment such as leg braces, walkers or wheelchairs that may attract attention?  Most importantly, what can you do to still feel beautiful?

A cute hat can help to cover thinning hair or bald spots.  Image courtesy of Stock Free Images.

Here are some suggestions from members of our PatientsLikeMe Forum, where patients with different conditions come together to discuss universal issues:

  • Using attractive scarves or hats to cover thinning hair or bald spots
  • Experimenting with different cosmetics to see what works best
  • Treating yourself to a spa manicure and pedicure as a pick-me-up
  • Trying out different explanations for your new brace/walker/wheelchair when asked to see what feels right and what produces the most acceptable responses
  • Soaking in a scented Epsom salt bath to ease pain and relax
  • Consulting with a hair stylist about better styles for thinning hair
  • Using gentle, non-drying facial cleansers and lotions
  • Switching to an electric razor to improve ease and safety
  • Donating your hair to Locks of Love to put a feel-good spin on it

Have you discovered other tricks to help you deal with a changing appearance?  Join this ongoing discussion in our forum or share your experiences in the comments section.


Live Better Together in 2013

Posted January 4th, 2013 by

Last year, over 170,00 patients learned from each other’s shared experiences every day on PatientsLikeMe. In 2013, we promise to continue putting the patient first. We’ll provide better, more effective ways for sharing real-world health experiences that help you, other patients like you, and organizations that focus on your conditions.

You’ll hear us talk more than ever this year about living better, together. What does that mean to you? As we kick off 2013, just know this…what inspires us most to live better, together is YOU.

From everyone at PatientsLikeMe, Happy New Year!

rare-disease-day-2013-plm-employees-raising-hands


A Patient Poem for the Modern Age

Posted December 31st, 2012 by

Can you be friends with someone you’ve never met in person?

The members of our online health community – now 300, 000+ patients strong – think so.  In fact, many of them say they depend on other members for support and encouragement, and for the all-important reminder that they are not alone.

As evidence, here is a touching poem written by a newer PatientsLikeMe member.  Although he wishes to remain anonymous, he says that he wrote the poem to “uplift people who feel like no one understands them.”

Dedicated to Internet Friends

It’s strange to have a friend

that you have never hugged,

lightly touched their arm,

or looked into their eyes.

But you have touched their soul

felt their heart

been embraced by their warmth of being.

A friend unseen is not a friend untouched.

The eyes of the soul will gaze,

the heart will embrace

the image will stand tall

but only in a dream.

Want to connect with those who can truly relate?  No matter what health condition you have – from multiple sclerosis to fibromyalgia to Parkinson’s disease – find others like you at PatientsLikeMe.


Not Recognizing the “New Me”

Posted December 10th, 2012 by

Are You Resistant to the Idea of a Wheelchair?

For many newly diagnosed patients, accepting help can be as difficult as accepting the diagnosis itself.  According to some of the members of our Parkinson’s disease community, here are a few signs that you may be struggling with the idea of becoming someone who might need help.

  • Have you found yourself feeling resentful when family, friends or strangers try to assist with something?
  • Have you resisted using a complimentary wheelchair (e.g., at the airport or on cruise ship) out of embarrassment?
  • Have you worried that becoming someone who receives help is going to change your lifelong identity?

If you answered “yes” to any of these questions, you are far from alone.  Many PatientsLikeMe members report that learning to accept help gracefully is one of the most challenging aspects of chronic illness.  And it’s not just allowing the help itself, per se, but seeing yourself in a new light, as one member puts it.  It’s not unusual to take great pride in being a superman or superwoman, the type of handy, resourceful person who does it all and is always helping others in the family or community.  This can be part of your self-image, as well as a source of self-esteem.

So what do you do when you are suddenly the person being helped instead of the helper?  It requires a psychological shift, according to our members, that involves letting go of ego and viewing the care and assistance you are receiving as a gift, not an insult.  It also means communicating frequently and lovingly about the issue, so as to address “the elephant in the room.”  If you can manage the task yourself, speak up and say so politely, advises one patient.  Otherwise, practice saying “thank you” and “I love you” with gratitude, encourages another member.  Ultimately, as our members state over and over, the best tools for coming to terms with the realities of your new life are a positive attitude, humor and support from others like you.

Can you relate to this common hurdle?  Join this insightful discussion in our forum or share your thoughts in the comments section.


Working Together for an AIDS-Free Generation

Posted November 30th, 2012 by

World AIDS Day Is Saturday, December 1, 2012

Saturday, December 1st, is World AIDS Day (hashtag #WAD2012), a time for re-upping your vigilance and awareness levels about HIV/AIDS.  The global AIDS crisis is not over until an AIDS-free society is achieved, and unfortunately, we’re not there yet.  That’s why the US theme for World AIDS Day 2012 is “Working Together for an AIDS-Free Generation.”

More than 30 years after the first reports of AIDS in the United States, approximately 50,000 Americans are still contracting HIV – the virus that can lead to AIDS – each year.  In addition, nearly 1 in 5 individuals living with HIV is unaware of his or her infection.  That’s why we can’t become complacent about HIV prevention and treatment.

Facing AIDS Is an Ongoing AIDS.gov Social Media Campaign

Join PatientsLikeMe partner AIDS.gov in “Facing AIDS.”  What can you do to help?  Start by reminding everyone you know that they can locate a local HIV testing site by texting their zip code to “KNOWIT” (566948) or using the HIV/AIDS Prevention and Service Provider Locator.  You can also set an example in your peer group by going and getting tested yourself.

Living with HIV?  Connect with the 3,000+ members of PatientsLikeMe’s HIV Community for information, support and advice.  If you know your HIV type (e.g., HIV-1: Group M: Type B), you can now search for those with the same type as you and learn from their experiences, including what medications they’ve taken and how they rate each drug’s effectiveness, costs and side effects.  From Atripla to Truvada to Norvir, discover how our patients evaluate commonly prescribed HIV treatments and read their battle-tested tips.

The point is that working together can improve care – and increase prevention.  Join the millions of Americans working towards an AIDS-free generation today.


Honoring Family Caregivers Everywhere

Posted November 26th, 2012 by

Is there a caregiver in your family?  For example, someone who looks out for an elderly parent or grandparent – or who cares for a child or spouse with a debilitating illness?

November Is National Family Caregivers Month

November is National Family Caregivers Month, a time for recognizing the important role of family caregivers in our society as well as the challenges they face on a daily basis.  Currently more than 65 million Americans (or approximately 29% of the US population) are serving in a caregiver role in any given year, averaging 20 hours per week.  Approximately 66% are women. The value of services these caregivers provide for “free” when caring for older adults is estimated to be $375 billion per year.

Yet what many people may not think about is the economic and health impact on the family caregiver.  Financially, caregiving families have median incomes that are 15% lower than non-caregiving families, and women caregivers are 2.5 times more likely to live in poverty than non-caregivers.  In terms of health and well-being, approximately 40 to 70% of caregivers report clinically significant symptoms of depression, according to one study, while 55% say they skip doctor appointments for themselves.  Read other eye-opening caregiver statistics here.

PatientsLikeMe strives to support and involve caregivers with our “CareTeam” concept, which was developed to include everyone who participates in the care of our patient members.  That could be a spouse/partner, parent, child, doctor, therapist, home health worker, sibling, relative or friend.  Patients can invite caregivers to join PatientsLikeMe, and once they are members, send them a CareTeam invite to link together their profiles.  That way, both the patient and caregiver can stay abreast of how the other is doing physically, emotionally and socially.

ALS patient Persevering’s CareTeam members (his wife and his sister, respectively) are displayed in the “About Me” section of his profile.

Currently, there are more than 7,000 caregivers registered with PatientsLikeMe, many of whom are active users of our forums, who chart their own symptoms and treatments and who are seeking information, guidance and support directly from patients or other caregivers.  Browse their profiles – even if they have no specific health issues, caregivers can monitor their well-being with tools like our InstantMe and Quality of Life surveys – and find out what their life is like today.


What’s Positive About Disease?

Posted November 21st, 2012 by

What Are You Unexpectedly Grateful for?

It may seem counterintuitive, but according to some of our members, there are actually some good things that can come out of being diagnosed with a serious illness.  In the spirit of Thanksgiving – a time when many people are reminded of all the things they have to be grateful for – we thought we would share some of our members’ uplifting sentiments.

From our Fibromyalgia Community, some of the unexpected benefits include:

  • Getting to spend more time with children or grandchildren
  • Taking advantage of “good days” with a little extra gusto
  • Appreciating what you have…and knowing it could be worse
  • Refocusing on new hobbies like gardening and meditation

From our Multiple Sclerosis (MS) Community, some of the unexpected benefits include:

  • Letting go of the pressurized feeling that you have to do it all
  • A deeper understanding of how many people face major challenges
  • Discovering new artistic talents, such as painting or needle work
  • Slowing down the pace of life and prioritizing sleep – without guilt

From our Epilepsy Community, some of the unexpected benefits include:

  • Learning to never judge a person by only what you see
  • Becoming more patient and not taking anything for granted
  • Filtering out fair-weather friends and uncaring partners
  • Having extra motivation to live the healthiest lifestyle possible

What about you?  Have you noticed some positive takeaways from your illness?  Share them in our comments section in honor of Thanksgiving.  And, from everyone at PatientsLikeMe, we wish you and your loved ones a wonderful holiday!


What We’re Reading at PatientsLikeMe

Posted November 7th, 2012 by

Here are some of the media items that grabbed our attention recently.

Four Things I Learned from Living with a Chronic Illness
Wise advice from a teenager who had to give up competitive gymnastics and find a new perspective on life after being diagnosed with a disease that causes chronic pain.

Access to Doctors’ Notes Aids Patients’ Treatment
A new study finds that patients better understand their condition and feel more in control when they can read their doctors’ notes (something you’re legally entitled to access).

Why We Need Ecological Medicine
Do we need exposure to a diversity of bacteria and germs for optimal immune health?  A thought-provoking essay about the “germ theory,” “hygiene hypothesis” and more.

What We're Reading at PatientsLikeMe.  Image Courtesy of Stock Free Images.

Coming Next:  Using an App as Prescribed
A New York Times piece about whether healthcare apps – now regulated by the FDA – could reduce costs and change the way we monitor health.

Help with ALS via Twitter
An article about our partner ALS Untangled and how they are applying scientific rigor to the investigation of alternative therapies in ALS, having reviewed 45 to date.

Mining the Internet for Speedier Alerts on Drugs
The Wall Street Journal examines the results of a study showing that Internet search algorithms can detect adverse events for certain drugs ahead of FDA warnings.


PatientsLikeMe Featured on Bloomberg TV

Posted October 15th, 2012 by

On October 9th, Bloomberg TV aired a four-and-a-half minute “Innovators” segment profiling PatientsLikeMe’s journey as company.  Filmed partially in our office in Cambridge, Massachusetts, the piece features PatientsLikeMe Co-Founder and Chairman Jamie Heywood as well as Ed Sikov, a PatientsLikeMe member with Parkinson’s disease.  Our thanks go to Bloomberg’s Nicole Lapin for her in-depth coverage of our evolution into a data-sharing platform that, as she puts it, “functions more like a clinical trial.”

Visit our Press page for other recent PatientsLikeMe media highlights.

Watch the Bloomberg TV profile below:


The Joy of Being Helpful

Posted August 27th, 2012 by

Many patients with life-changing conditions report feelings of grief and guilt about no longer being able to do many of the things they did in the past.  As a recent discussion in our forum revealed, however, patients are finding ways to reset their perspective and boost their self-esteem by focusing on what they are still able to give to others, despite the challenges of their illness.

The Joy of Being Helpful

Here are some of the small and large contributions our members have made, helping them to feel good about themselves:

  • Going to the hospice to sit and talk with the residents
  • Sending handwritten letters via snail mail to loved ones
  • Participating in educational events about the role of service dogs
  • Getting good friends together for a gathering to reconnect
  • Volunteering in a food bank to appreciate having food to eat
  • Calling an isolated grandparent or friend regularly on the phone
  • Allowing the cat from down the road to come inside and snuggle
  • Fostering or adopting medically fragile children in the system

Have you found strength – or a renewed sense of purpose – by doing what you can to help others?  Share your experiences in the comments section.  Also, you may want to check out two books recommended by our members for inspiration:  Strong at the Broken Places, about five different patients with chronic illnesses including ALS and Crohn’s disease, and 29 Gifts, written by a multiple sclerosis (MS) patient whose South African healer gave her a prescription of helping others for an entire month.


The Importance of Open Access: An Interview with Patient Advocate Graham Steel

Posted July 9th, 2012 by

A native of Glasgow, Scotland, Graham Steel is a longtime “Guest Researcher Member” of PatientsLikeMe.  Following the death of his brother Richard at the age of 33 from a rare condition known as variant Creutzfeldt-Jakob Disease (vCJD), Graham became involved in patient advocacy work, and most recently, in lobbying for open access to published scientific research.  Find out how this active blogger and Tweeter developed a passion for data sharing in our interview below.

Patient Advocate and Open Access Supporter Graham Steel

1.  Tell us how you first got involved in patient advocacy work.

As per my PatientsLikeMe profile, this started in 2001. Two years after the loss of my only sibling to vCJD, I was approached by a UK organization called the Human BSE Foundation to act as their Vice-Chair. Quite a daunting task for a 33-year-old!! I was involved in that capacity until 2005. Over the years, my interests in science and information sharing to this day continue to diversify.

I’m a great believer in complete openness and transparency as anyone who knows me in real life or via the Internet knows. One of my key assets seems to be “connecting people,” something that I started doing at the age of four. I enjoy making new connections and this is made so much easier with the advent of the web.

2.  You’ve been a member of PatientsLikeMe since 2007.  What key changes have you seen the site go through in that time?

I am not 100% sure where I first found out about PatientsLikeMe but it was most probably via the main ALS TDI Forum. I’m not a “regular” PatientsLikeMe forum poster with only 197 posts since February 2007. Some key changes that spring to mind: the addition of a PatientsLikeMe blog was a great development. A couple of years ago, a “Share This” button was added to the blog making it much, much easier to share content via social networking sites, etc.

The PatientsLikeMe platform itself has expanded in many ways since 2007. At that time, if I recall correctly, ALS/MND was the only disease covered. Now, that has increased to >1,200 conditions, so that alone is a major development. New features get rolled out on a regular basis and they are accompanied with good and clear explanations. It’s also much easier to ‘drill down’ to/for specific content, and the site is generally simpler to navigate than back in 2007, IMHO.

The Logo for the Open Access Movement

3.  You have recently campaigned for open access publishing. Why is this important to patients?

Yes, as of late 2006, I stumbled upon my first Open Access (OA) Manuscript, as it happened via Public Library of Science Pathogens. Up until that point, I had assumed that ALL Scientific, Technical & Medical (STM) content was locked up behind paywalls. As such, it was very enlightening to discover an alternative to traditional publishing. As matters stand though, only ~15% of Peer Reviewed STM Manuscripts are OA, and subscription-based publishing is still “the norm.” The reason that I became part of the OA Community was to use my networking skills to make more people aware of and involved in OA. OA itself however is just one cog (but a significant one) in the wheel of Open Science!!

“Why is OA important to patients?” Where does one start?! One of the best recent responses to that question comes from PatientsLikeMe’s very own Dr. Paul Wicks with his guest post over at the Public Library of Science Blogs dated June 14th, 2012, and entitled “Open Access Is Not For Scientists. It’s For Patients.”

Two key sections of that post that stood out for myself most were:

“In the past six years, we’ve found that more and more patients are trying to access research studies written about them, including studies where they were participants. In addition, they are increasingly capable of understanding them. Yet closed access is locking them out of better understanding their conditions and their choices.”

And…

“As a society, we need to recognize that our understanding of disease doesn’t belong to science. It belongs to the patients (who are also usually our funders, by the way), and we should exist only to serve them.”

4.  What do you see as being critical for the future of patient advocacy?

The Internet, Open Data and The Semantic Web. In terms of the sharing of data from patients, PatientsLikeMe was the first platform (that I am aware of) that made it easy for patients to share their data online with others. Whilst this data is “open,” it is open to the PatientsLikeMe community (and selected others) but not open at large. As stated in June this year by Sir Paul Nurse, “the President of the Royal Society said there was a need to put safeguards in place to protect confidentiality.” Sir Paul said that in reality no data was “totally secure” and that doctors already relied on personal information for treatment. “If you want a complete guarantee of privacy you would have to diagnose and treat yourself,” he said. (Also, see the recent “Science as an open enterprise” report by The Royal Society).

John Wilbanks Speaking at TED Global.  Photo Credit:  James Duncan Davidson.

In terms of the semantic web and link data, entities such as http://linkeddata.org/ and http://www.linkeddatatools.com/ have a lot of potential in terms of what we can do in a linked up world. Also in June, in his talk at TED Global entitled “Unreasonable People Unite,” John Wilbanks made a number of interesting points. From the TED Blog:

“Wilbanks’ proposal is a medical commons, a way for people to gather this medical data and share it freely. People are neurotic about privacy and keeping control of their data. ‘Some of us like to share as control.’ And, he believes we live in an age where people agree with him. He mentions a study run at Vanderbilt University in Tennessee. ‘It’s not the most science-positive state in America,’ he says. ‘Only 5% wanted out. People like to share if given the opportunity and choice.’ And not using this data to understand health issues through mathematical analysis ‘is like having a giant set of power tools but leaving them not plugged in while using hand saws.’”


Take an HIV Test. Take Control.

Posted June 27th, 2012 by

“CDC estimates that 55 percent of adults – and 28 percent of adults with a risk factor for HIV – have not been tested.  Too many people living with HIV are being tested and diagnosed too late to take advantage of effective HIV treatment and prevention options.”
Dr. Kevin A. Fenton, Director,
CDC’s National Center for HIV/AIDS Prevention

Today Is National HIV Testing Day

Today is National HIV Testing Day, now in its 17th year.  Given that 1.2 million Americans are living with HIV and one in five is unaware of his or her infection, the goal of this annual event is to promote regular testing and early diagnosis.

If you haven’t gotten tested recently, here are three quick ways to locate a testing center near you:

Scared to take the test?  It’s perfectly understandable.  But there are good reasons to do it.  If you test negative, you can be certain of your status. If you test positive, you can begin receiving specialized care and treatment to help you stay healthy. You can also look to the 3,000+ patients in PatientsLikeMe’s HIV community for information and support.

More than 30 years after the discovery of AIDS, things are very different.  Thanks to advances in treatment, you can live a long, productive life with HIV, just like basketball legend Magic Johnson, who is now 20 years post-diagnosis and recently narrated an ESPN documentary about his experience entitled “The Announcement.”

So don’t put it off – get tested today.


Women’s Health Week: “It’s Your Time”

Posted May 14th, 2012 by

Ladies, we know your lives get busy.  So why not pull out your calendar or smartphone right now and see if you’re due for a visit to your health care providers?  You’ll be doing your part for National Women’s Checkup Day (observed today, Monday, May 14th), an annual event that’s part of National Women’s Health Week.

It's National Women's Health Week

Checkup Day encourages women to get regular checkups that are vital to the early detection of heart disease, diabetes, cancer, mental illnesses, sexually transmitted infections and other conditions.  The reason is simple.  Women often serve as the caregivers for their partners, children and parents. As a result, their own well-being can be secondary at times.  The theme of National Women’s Health Week 2012 – “It’s Your Time” – speaks to the fact that women need to prioritize their own health as well.

Not sure what preventative screenings are recommended for you?  Check out this handy chart organized by age group.  Then take the Checkup Day pledge along with women around the country to get at least one recommended screening during May. If you’re concerned about cost, you should know that all recommended preventative screenings – such as mammograms, colon cancer screenings, Pap screenings and well-woman visits – are now covered by your insurance plan with no out-of-pocket costs.

Join the 2012 WOMAN Challenge and Get Healthy for Good

But scheduling an appointment may just be the first step.  If you’re looking to get healthy in 2012, why not do it with the help of a community?  The 2012 WOMAN Challenge offers an online platform for tracking your nutrition goals and daily activity.  The challenge is to follow through with planned nutrition changes and be active 30 minutes a day, at least five days a week, for six out of eight weeks.  Register here to get started.

If you’re a woman living with a health condition, you can also find a community of women right here at PatientsLikeMe.  We have 70,995 female members who are sharing how they are managing more than 1,000 different conditions, including fibromyalgia, endometriosis, menopause, infertility and postpartum depression.  Take control of your condition with the help of women just like you today.