HIV/AIDS

Coming together to recognize World Aids Day

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: Plan your own event using Aids.gov guidelines Check out their Facing AIDS photo gallery and submit your own photo Watch the Center for Disease Control and Prevention’s 2013 Vital Signs report about HIV and join the “Lets Stop HIV Together” campaign And if you’re sharing your story on twitter, don’t forget to use #FacingAIDS There are over 3,500 PatientsLikeMe …

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Coping with Changes in Physical Appearance

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? 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 …

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Live Better Together in 2013

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!

A Patient Poem for the Modern Age

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”

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. …

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Working Together for an AIDS-Free Generation

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. 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 …

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Honoring Family Caregivers Everywhere

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, 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 …

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What’s Positive About Disease?

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 …

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What We’re Reading at PatientsLikeMe

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. 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 …

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PatientsLikeMe Featured on Bloomberg TV

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:

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