12 posts from May, 2012

World No Tobacco Day: 10 Facts About Secondhand Smoke

Posted May 31st, 2012 by

We’ve written about how smoking is the single largest preventable cause of disease and premature death in the US.  We’ve also highlighted some of the treatments that our 4,000+ members who report tobacco addiction have tried in their quest to quit.

The 2012 World No Tobacco Day poster.  This year’s theme, selected by the World Health Organization, focuses on exposing the tobacco industry’s interference with global tobacco control efforts.  Learn more by clicking the image.

But today, in honor of World No Tobacco Day, we’d like to focus on the global consequences of secondhand smoke, or the smoke that fills restaurants, offices, homes and other enclosed spaces when people burn tobacco products.  Given that there are one billion smokers around the world, secondhand smoke (also known as “passive smoking”) has become a serious public health issue.

How serious?  Deadly serious.  Here are ten hard-hitting facts from the World Health Organization (WHO), the sponsor of World No Tobacco Day.

  • There is no safe level of exposure to secondhand tobacco smoke.
  • There are more than 4,000 chemicals in tobacco smoke, of which at least 250 are known to be harmful.
  • More than 600,000 premature deaths are caused by secondhand smoke each year.
  • In 2004, children accounted for 31% of the deaths attributable to secondhand smoke.
  • Over 40% of children around the world have at least one parent who smokes.
  • Almost half of all children regularly breathe air polluted by tobacco smoke.
  • Secondhand smoke can cause sudden death in infants and low birth weight in pregnant women.
  • Cigarettes, bidis and water pipes all produce secondhand smoke.
  • Less than 11% of the world’s population is protected by comprehensive national smoke-free laws.
  • Research shows that smoke-free laws do not harm business – and in fact, are popular.

Want to show your support for World No Tobacco Day?  Join the cause on Facebook.  If you live in the US, you can also check this map to see your state or city’s laws regarding smoking in restaurants, bars and workplaces.


A Peek at the May Newsletter for Members

Posted May 29th, 2012 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our May edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.

MONTHLY MUSINGS

Why PatientsLikeMe?  Over the years, many of you have shared why you’re here. We recently found some videos of members like you who helped create the community of 150,000+ that we are today.  Here’s what they had to say:

“To be truthful, I’ve learned a whole lot more from other patients than I could ever have in a doctor’s office,”  judy4etsu told us.  According to pokie too, who has PDepilepsy and type 2 diabetes, “You’ve got to talk to somebody.  You’ve got to say, ‘I’m having a bad day.’”  For sontzie66, it’s the disease measurement tools like the Parkinson’s Disease Rating Scale (PDRS).  “I answered all the questions, and I got my rating of where I was,” she said.  “I had no idea what level I was with the disease.”

Thanks to all of our members for being so willing to share your voices through videos, blog interviews, forum posts and more. Your experience matters and sharing what it’s like to live in your shoes is helping to change healthcare for the better.

What’s it like for youAdd a story to your profile today.

Kate, Emma, Liz, Jeanette & Sharry

Kate"" Emma"" Jeanette"" Sharry""

JOIN THE CONVERSATION

Have you poked around the forum recently?  We now have lots of different rooms to meet your needs.  For example, did you know about the Lungs and Respiratory Room, Women’s Health and Pregnancy Room and Kidneys and Urinary Room?  Find your favorite room(s) and check out these active threads below.

Need help with something on the site?  Visit the PatientsLikeMe Site Help Room for answers from veteran members.

CONDITIONS GO INTERACTIVE

What do you want to learn at PatientsLikeMe?  This is a question we started asking new members during signup a few months ago.  Now, all of their comments are featured instantly on our new condition reports, and you have the opportunity to reply!  Visit the “Who’s New” tab (pictured above) to welcome a new member or offer a bit of advice.

In addition, there are now live feeds of all new profile stories related to that condition, including condition updates, symptom updates and QOL survey answers.  (See an example here.)  That way, you can keep up with your condition’s activity in real time and see other members’ comments, stories and replies all in one place.

Explore our revamped condition reports (while logged in) to try out these new interactive features!



Someone Like Me

Posted May 25th, 2012 by

We are pleased to present a guest post by PatientsLikeMe member Jasmine (Jazz1982), who was diagnosed with multiple sclerosis (MS) in her mid-twenties.  Don’t miss this beautiful essay about the commonalities between all patients who have lost functionality – regardless of how different their conditions might seem.

I recently met someone that happened to be just like me but not in the way that I expected. I’m currently doing my master’s thesis and was interviewing an occupational therapist who had had a stroke herself. Her name is Lena, she’s 55 years old and not only has she had one stroke, but four of them. You might think this had made her “disabled,” but as with a lot of people I meet that have a chronic illness, it has only enabled her even further and made her more determined. The interview was supposed to last a maximum of 30 minutes but lasted three hours. We just couldn’t stop talking.

MS Patient and Guest Author Jasmine (Jazz1982)

At this point I think I should introduce myself. My name is Jasmine, I’m 29 years old and I have multiple sclerosis (MS). To a layman’s ears, this would mean that on a random basis I lose one or more functionalities, and with medication, I might gain one or more functions back or maybe not. I’ve been one of the lucky ones, and I’ve gained almost all functionality back. A big thank you to my neurologist and rehabilitation team for helping me reach this point, and it’s a very happy point.

I’ve always been on the look out for someone just like me, give or take a few symptoms, only I was never been able to find that certain someone. That is, until Lena. I can’t say for sure how it all started but we started asking about each others’ symptoms, and I found out that she was on an MS drug for fatigue. This at first took me by surprise, an MS drug used for people who’ve had a stroke? What is this black magic that she speaks of? She went onto say that it has worked wonders for her and has made it possible for her to continue working. Then it hit me like a meteor:  we might have different labels that cause our symptoms, but what difference does it make if I’m fatigued or she is? It’s all listed under the category of fatigue, and if the medicine works for me, why not for her?

The more we shared, the more fascinating the other became. We first started off with similar symptoms and then diverged into our more “unique” ones and between the both of us there were a couple of doozies! I’ll give one of mine as an example – a time came where I could not recognize faces and explaining that to people was an impossible task as they could not relate to it so I simply avoided people altogether. She has never been through it, but the basic understanding of losing a functionality that is invisible to everyone else but you is a loss that once experienced makes it familiar. Basically, monkey suffers, monkey feels.

The repercussions of this had a larger than life effect on me and saved me many a session on the therapist’s couch. Amazingly, through the exchange of our uniquely individual symptoms that were incomprehensible to the rest of the world, and after years of feeling like an outsider, I suddenly felt “normal.” Imagine that, me normal!

I’ve always been the outsider, and now I suddenly felt like I wasn’t alone.

We have this idea that only someone that has the same disease knows what we’re going through, and I can not find that to be true anymore. I believe that we are on this Earth to connect with one another, despite age, color, race or disease. Being sick is merely another factor added to the matrix of connecting with others. We’re all people bringing our unique mix of genes, environment and strategies to the table of life. It sounds like it makes things more complicated, but to me, it has widened my net and simplified things. I don’t need to categorize and filter people and go through a checklist. All of that melts away into one question: “Does he/she get it?'” Simple, tried and tested on many a person, and I would highly recommend you try it as well.

So, the take-home message would be: talk to others. They don’t have to have the same disease to know what you’re going through, they just need the basics and the understanding. And I know that everyone out there can find someone out there that is just like you. Happy hunting!

These words are dedicated to Lena, thank you!

A big thanks to Jasmine for sharing her poignant revelation with all of us.  Stay tuned for more guest posts by our amazing patients!


Free Up Research! On Our Way to 25,000 Signatures

Posted May 23rd, 2012 by

Have you heard about the petition launched to the White House asking for all federally funded research to be freely accessible over the Internet? We’ve signed it and here’s why…

Today, government-funded research (that’s research paid for with your tax dollars) is often something you can have access to in published scientific journals, but for a charge.  The petition is a call to action for the current Administration to make this research open to anyone who wants to read it — study participants, other patients, researchers, healthcare providers, industry, students, or anyone at all.

"We the People" Allows You to Send Petitions Directly to the White House

Under the Administration’s new “We the People” policy, if the petition gets over 25,000 signatures within 30 days, the White House will issue a response. At the end of day two, there are already over 10,000 signatures! (Anyone can sign, even those internationally.)  You can read more about this open access movement and see what others are saying with the twitter hashtag #OAMonday.

Simply put, we believe this campaign represents the power of Openness. At PatientsLikeMe we’ve long believed in the power of open access and take steps to ensure many of our publications such as our recent epilepsy user survey, our lithium study in Nature Biotechnology, and most of our other published research is all freely available without needing to be an academic researcher. Why? Because patients like you want to read the most up-to-date scientific research and we believe you have the right to do so without impediment.

So, we’ve signed the petition.  Have you?


The buzz around the office…

“In the UK, there’s a saying that e-patients have about their healthcare decisions: ‘Nothing about me, without me.’ There’s no better example of the disconnect between academic medicine and patients than a research study *about* patients that they can not read.”
– Paul Wicks, PhD, R&D Director, PatientsLikeMe (Signature #817)

“We call on patients, caregivers, family, and friends to sign this petition and send a clear message that life-saving research paid for with tax dollars is a public good and should be shared in the same spirit with which altruistic patients like you sacrificed their time, wellbeing, and sometimes even their lives.”
– Ben Heywood, President and Co-founder, PatientsLikeMe (Signature #4473)

“Some issues transcend politics and this is one of those.  When you are sitting in a hospital trying to make a decision about yourself or a loved one, we believe you should not have to pay to access government-funded research results that could help you.  Science is not done for universities or for scientists; it is done to better our understanding of medicine and disease to help you the patient.  This research belongs to the public, to the patients who made it happen by volunteering and funding it with their tax dollars.”
–  Jamie Heywood, Co-founder, PatientsLikeMe (Signature #11646)

The Future of the Personal Genome

Posted May 21st, 2012 by

“If you want to understand health, you have to understand what it means to be sick, at phenomic and molecular levels, so you can correct it in a holistic and effective way.”
Jamie Heywood

In February, PatientsLikeMe Co-Founder and Chairman Jamie Heywood was invited to participate in a “Innovation Series” panel sponsored by the MIT Enterprise Forum of Cambridge.  Entitled The Future of the Personal Genome, the event focused on what lies ahead now that genome sequencing is becoming more affordable for the average person.  (It cost around a million dollars in 2007; today, it costs close to $1,000.)

What is Jamie’s perspective on personal genetics, including the issues and opportunities involved?  Check out the first seven minutes of the video below for an overview.  From there, the panel – which included Dr. Michael Pellini, Dr. George Church and Colin Hill, and was moderated by Dr. Kevin Davies – digs into the intricacies of this important topic, including how to use genetic data to develop more personalized medicine.


Strengthen Your Knowledge During National Osteoporosis Month

Posted May 18th, 2012 by

Of the estimated 10 million Americans with osteoporosis – which means “porous bones” – 80% of them are women.  That’s why we wanted to shine a spotlight on this condition during National Women’s Health Week.  Approximately one in two women over the age of 50 will break a bone because of osteoporosis.  Even more alarming is the fact that 24% of hip fracture patients age 50 and older die in the year following their fracture.

Talk to Your Family About Bone Health During National Osteoporosis Month

Now that you know the facts, it’s time to talk to your family about what you can do to prevent this scenario.  The National Osteoporosis Foundation’s Generations of Strength Campaign encourages women (and men!) to start conversations about bone health and family history during National Osteoporosis Month.  Have either of your parents experienced a broken hip, spine or wrist, for example?  What about height loss or a spine that curves forward (two possible signs of broken bones in the spine)?  Research shows that genetics plays a major role in osteoporosis.  If either of your parents has a history of osteoporosis or broken bones, you are more likely to break a bone.

Do You Have a Parent Who's Experienced Broken Bones, Height Loss or a Forward-Curving Spine?  You May Be at Risk for Osteoporosis.

Fortunately, there are preventive steps you can take.  Thirty years ago, osteoporosis was generally considered a part of normal aging.  But today researchers know a lot more about how to protect your bones throughout your life.  For example, getting enough calcium, vitamin D (which aids calcium absorption) and exercise is very important.  Eating fruits and vegetables is also beneficial to bones.  On the other hand, eating poorly, smoking, drinking too much alcohol and not exercising can cause bone loss.

In addition, researchers now have a way to detect osteoporosis before a broken bone occurs.  It’s called a bone density test, and it measures your bone density in the hip and spine.  That’s because fractures in these areas can cause more serious problems, including longer recovery time, greater pain and even disability.  Using a Central Dual Energy X-ray Absorptiometry (DXA) machine, the test usually takes 15 minutes or less.  It is non-invasive and painless.  While it does expose you to radiation, you are exposed to 10-15 times more radiation flying roundtrip between New York and San Francisco.

A Snapshot of the Osteoporosis Community at PatientsLikeMe

If you’re a postmenopausal woman – or a menopausal woman with a family history of osteoporosis or other risk factors – talk to your doctor about whether you should have a bone density test.  Men over the age of 50 should do so as well.  Based on your resulting T-score (the measurement of bone density), your doctor can determine how healthy your bones are and whether you are a candidate for osteoporosis treatments, which can help to improve bone density and even reverse the condition to some degree.  According to the 911 patients with osteoporosis at PatientsLikeMe, some of the most commonly used treatments include Fosamax, Actonel and Boniva.  (Click each treatment name to see how patients evaluate the effectiveness, side effects, cost and more.)

As we wrote at the beginning of the week, women often put their needs secondary to that of their family.  This is an example of how it’s crucial to prioritize your own health.  Because if you break your hip, how well will you be able to care for your family then?


A Day in the Life of Biz Dev Team Member Arianne Graham

Posted May 16th, 2012 by

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features employees from different departments.  So far, we’ve interviewed User Experience Engineer Cris NecocheaResearch Assistant Shivani Bhargava, Office Manager Alison Dutton and Research Scientist Timothy Vaughan. Today we hear from Arianne Graham, a Harvard MBA graduate who joined the business development team in 2010.  What current project is she most excited about?  And how is working at PatientsLikeMe different than her previous healthcare jobs?  Find out that and more in our interview.

1.  What’s it like to be part of the business development team?

When spending time with friends and family or even meeting new people, I’m always excited to answer that small talk question: “What do you do?” I happen to think I have the best job ever.

Arianne Graham, Business Development at PatientsLikeMe

As part of the business development team here at PatientsLikeMe, my colleagues and I work with everyone who cares about patients (including providers, researchers, pharmaceutical companies, insurance companies, pharmacies, and many more!). We look at how the real-world data shared by our members can transform their businesses for the benefit of patients everywhere.

Sounds like fun, right? Most of the time, it really is. This is also hard work, though. Sometimes I feel as though the rest of the world is not yet ready to hear the patient’s voice. The truth of each patient does not always fit perfectly inside the constraints of a randomized clinical trial or a research protocol. But it’s here to stay, and we are actively finding ways to layer this emerging data source on top of the world in which we live. That’s reason enough for me to get up every day and come to work with my very talented team.

2.  What kind of projects are you working on at the moment?

I am often the first contact for individuals and organizations that contact us via partners@patientslikeme.com or support@patientslikeme.com. We receive multiple messages a day with ideas regarding how PatientsLikeMe might work with another company or integrate a new technology. It’s up to me to prioritize which opportunities to pursue now given the market landscape, and which to save for later.

One of our most basic and popular services is clinical trial recruiting. On any given day, I have to do something related to one of these campaigns. The members that use PatientsLikeMe are probably more likely than most to be motivated to try investigative therapies, to access better healthcare, or to simply participate in research. Finding the right patients for a study can be so difficult, but thanks to the demographic and health data patients report to us, we can easily let patients know about clinical trials for which they may be eligible.

The Clinical Trial Matching Tool at PatientsLikeMe

The project I am most excited about, however, is a clinical trial of PatientsLikeMe as an intervention. We have partnered jointly with a pharmaceutical company and an integrated payor/health system to empirically test the effects of the website on patient activation and health literacy. Additionally, this is one of the first projects to really integrate PatientsLikeMe into the clinical encounter between doctor and patient. We haven’t publicly announced the details yet, so stay tuned. I can’t wait to tell you more!

3.  How have your parents – who are both doctors – influenced your career?

As the child of two pediatricians, I know I was exposed to the healthcare industry and certainly aware of it more early in life than most people. I noticed and appreciated that they treat their patients as people, not diseases. They remain committed to serving their patients, to helping them get better so they can lead productive lives. For them, the medical field is not so much a job as a calling. I know I felt led to serve, too. Even when I abandoned my pre-med plans in college, I knew that healthcare is where my heart is. I just found another way to pursue it.

I cannot imagine working outside of this industry because it appeals to me on so many levels: I can serve others, and I’ll never get bored. Healthcare is what we used to call in consulting a “big, hairy, ugly.” It is messy and complicated, it affects us all, and there are no clear answers. All of that makes this sector intellectually stimulating and extremely rewarding.

4.  You’ve worked for pharmaceutical companies, a hospital and a consulting firm.  How is working at PatientsLikeMe different?

I think all of my previous work experience has prepared me well because I lean heavily on what I know to be true in healthcare in my current role. While I knew exactly what to expect in pharma, hospitals, and in consulting, PatientsLikeMe has proven to be a bit like the Wild Wild West. We are creating a world that never existed before: where patients take charge, and their real experiences are being integrated into the healthcare system around them. There are absolutely no rules yet. It’s exciting and uncomfortable; inspiring and frustrating. And you know what? I wouldn’t have it any other way.

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Interested in making a difference in patients’ lives?  Check out our Careers page to see our current job openings.  Headquartered in Cambridge, Massachusetts, PatientsLikeMe is looking for a Marketing Coordinator, Community ModeratorResearch Client Manager and more at the moment.


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.


Fibromyalgia Awareness Day Is This Saturday

Posted May 10th, 2012 by

What Are You Doing for Fibromyalgia Awareness Day?

Sponsored by the National Fibromyalgia & Chronic Pain Association (NFMCPA), Fibromyalgia Awareness Day (Saturday, May 12th) is an annual event dedicated to raising awareness of this complex chronic pain disorder.   Fibromyalgia (FM) affects an estimated 10 million people in the US, 75-90 percent of whom are women—but it can also occur in men and children.

The 2012 theme for Fibromyalgia Awareness Day is “Make Fibromyalgia Visible.”  There are several ways you can help do this:

You can also take a moment to brush up on this often-misunderstood condition, which is characterized by pain or aching in the muscles (myalgia) and multiple points of tenderness (trigger points).  With more than 23,000 patients, the fibromyalgia community at PatientsLikeMe is a great place to gain knowledge.  Some of the most commonly reported symptoms in our community include muscle and joint pain, brain fog, pain in the lower back and balance problems.

Symptoms Commonly Reported by PatientsLikeMe Members with Fibromyalgia

What are our members doing to cope?  Commonly reported treatments include selective serotonin and norepinephrine reuptake inhibitors (SSNRIs) such as Duloxetine (Cymbalta) and Venlafaxine (Effexor); analgesic and anti-convulsant medications such as Pregabalin (Lyrica) and Gabapentin (Neurontin); and muscle relaxants such as Cyclobenzaprine (Flexeril) and Carisoprodol (Soma).  Click on each treatment name to see how patients evaluate the effectiveness, side effects, cost and more.

For more insight into living with the “constant, widespread pain” of fibromyalgia, check out this video made by a recently diagnosed patient. And if you’re a PatientsLikeMe member, don’t miss the forum tag Life with Fibromyalgia.


Spotlighted Blogger: Meet Jessica of “Jessica and Psoriasis”

Posted May 8th, 2012 by

Psoriasis Blogger Jessica Gough of "Jessica and Psoriasis"

Welcome to the latest installment of our “Spotlighted Blogger” series.  This spring we are focusing on psoriasis patient bloggers, starting with Lissa back in March and Alisha B. a few weeks ago.

Today, we’d like to introduce you to Jessica Gough, a 19-year-old from the UK who recently started a blog called Jessica and Psoriasis.  What kind of reaction has she gotten?  And what tips does she have for those who feel isolated due to this chronic skin condition, which can cause itching, rashes and plaques (scaly patches)?  Check out our interview below.

1.  How are you feeling about being a newly minted “psoriasis blogger”?

The best word to describe how I feel about being a psoriasis blogger is relieved. I chose relieved because there is so much I have experienced throughout my psoriasis journey – both positives and negatives – that I wanted to talk about that even my closest friends and family were unaware of.  By writing my blog I have been able to explain all of my experiences without having to face the challenges of approaching the subject in general conversation. I have also found that by using my blog to share my journey with psoriasis it has enabled me to talk and share information with other psoriasis sufferers, which I have found warming and comforting.  Since starting my blog the support and feedback I have received has been overwhelming.

2.  Tell us how psoriasis affects your daily decisions – from shaving to clothing.

I believe with psoriasis you choose how much you let it affect your daily life and decisions. For me I would say my psoriasis majorly affects my decisions based upon the way I present myself for the day. If I wake up and skin has flared up or has worsened, I find I have to choose the right kind of clothes. I tend to wear leggings most of the time as the material doesn’t rub my skin and they are cool in comparison to jeans for example. Also if I want to wear a jumper I make sure I have a top protecting my skin underneath so my skin doesn’t become itchy.

Jessica's Arms During a Psoriasis Flare-up

Dependant upon the look of my skin also affects decisions such as whether I can wear makeup or whether I can shave my legs in the shower. If my skin is red and flaky I try as much as possible not to touch it with products that could make it worse. This includes shaving my legs, although if I am going out to a nightclub or party, though, I will plan in advance in order to make sure I can shave my legs, and I will use moisturizers to make my face suitable for makeup. Other than clothes and personal care, I try to make sure my psoriasis does not affect my decisions.  However, sometimes with a flare-up my mood can be worsened, and I tend to find things harder to cope with generally.

3.  What is your personal recipe for getting through a psoriasis flare-up?

My personal recipe probably has to be not to give up. When you have a flare-up, it is a perfect opportunity to put tips and techniques to the test, ask other people what they would recommend or go back to your consultant and ask for help. I do usually have a routine of making sure I have a bath every night to relax and then covering myself in moisturizers and creams before bed to help me sleep better. I also wear socks and gloves depending how bad my skin is to stop me itching and making my skin bleed. I find the more I itch, the more distressed I become, which obviously worsens the flare-up. So I try to stop it from becoming a cycle.

4.  Any advice for someone who feels alone or isolated due to psoriasis?

I think feeling alone is a common feeling amongst psoriasis sufferers, and I certainly felt alone before writing my blog. My advice would be to talk to other people, find out about chat boards, blogs and charities relating to psoriasis, and use these resources to share ideas, stories and experiences with others.  You may be surprised at some of the feedback you receive. I used to feel that even though I had support from many people around me, no one ever actually understood what I was really feeling and what I was going through. Talking to other people gave me the freedom to say how I really felt and not be embarrassed. I personally believe that talking with others about living with my psoriasis has been part of my therapy.


Get Moving for Arthritis Awareness Month

Posted May 3rd, 2012 by

Did you know that arthritis is the most common cause of disability in the US?  Or that this disease – which affects some 50 million Americans – has more than 100 different types?

Why Is Movement Important?  Obesity Prevalence Is 54% Higher in Adults with Arthritis.

May is Arthritis Awareness Month, a nationwide event sponsored by the Arthritis Foundation (AF) to raise awareness and funds.  All across the country, Arthritis Walks will be held this month as part of the Let’s Move Together campaign, which encourages people everywhere to get moving to prevent or treat arthritis.  That’s because walking is an easy, effective way to keep your joints mobile, lose weight and boost overall health.

Another way you can get involved is by honoring a loved one who is living with (or lived with) arthritis through Hope Through Heroes.  Celebrate your father, mother or another important person in your life by sharing their inspirational story.  Then email your tribute or memorial page to other friends and family, who can post their own testimonials and/or make donation in that person’s name.

Given that arthritis strikes 1 in 5 adults, you likely know someone with the condition.  But you may not know how extensive it is.  A common myth is that arthritis only occurs in old age.  Yet two-thirds of those with arthritis are under the age of 65, and 300,000 of them are children with juvenile arthritis (JA).  (JA itself has several subtypes, including polyarticular onset JA and systemic onset JA.)

Some of the Commonly Reported Symptoms in the PatientsLikeMe Osteoarthritis (OA) Community

At PatientsLikeMe, our rheumatoid arthritis (RA) and osteoarthritis (OA) communities confirm that these two common forms of arthritis can affect people of all ages.  For our 2,737 patients with RA, the most common age bracket is age 40-49.  And amongst our 1,900 patients with OA, the 50-59 age bracket is the largest.  Another key takeaway is that women are disproportionately affected (92% women vs. 8% men for our RA community, and 90% women vs. 10% men for our OA community).

Have you been diagnosed with a form of arthritis?  Got questions for others like you?  Chat with the 19,000+ members of our Muscles, Bones & Joints Room today.


Jamie Heywood Is One of Hacking Work’s 100 Great Disruptive Heroes

Posted May 1st, 2012 by

Learn More About Hacking Work's 100 Great Disruptive Heroes

How do you define a disruptive hero?  Here is Hacking Work’s three-pronged filter:

  • Disruptive because they are proving conventional wisdom wrong.
  • Heroes because they are changing the rules of the game, for the better.
  • Great because they helped to change us all for the better.

Given these demanding criteria, we are pleased to announce that Hacking Work has recognized PatientsLikeMe Co-Founder and Chairman Jamie Heywood for disrupting the accepted rules of the medical world.  How did his upbringing encourage him to ask questions?  Why does he believe it’s possible to both challenge and respect the healthcare system at the same time?

Find out that and much more in this thought-provoking interview: