18 posts from October, 2011

A Peek at the October Newsletter for Members

Posted October 31st, 2011 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our October 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

Do your friends and family give you the support you need as a patient? Or have you found that – despite their best efforts in some cases – they just don’t understand what you’re going through? We’ve noticed that this tends to be a hot topic in our forum, drawing many members to make their first post.

A PatientsLikeMe Member Enjoying Some Support

Here’s what some had to say:

  • “I was called a hypochondriac, a faker, a selfish jealous person, and the downfall of my family. I was astounded.” – Patient with fibromyalgia
  • “My friends know I have it and they are supportive, but I can tell some get uncomfortable talking about it.” – Patient with multiple sclerosis (MS)
  • “My family doesn’t really un derstand and has a tough it out or ‘pull yourself up by your bootstraps’ mentality.” – Patient with major depressive disorder
  • “I have lost two friends of over 10 years. They were sick of me being late, canceling plans, or saying I wasn’t up to doing things.” – Patient with rheumatoid arthritis (RA)

What about you? Do you believe anyone who’s not also living with the same conditions can truly “get it”? Share your stories in this ongoing forum discussion, a place where (as one member puts it) “you can find people who care because they know.”

Kate, Emma, Liz, Jeanette & Sharry

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

JOIN THE CONVERSATION

What’s happening in the forum? Check out some of the recent buzzworthy threads below. Then jump in with your own questions and answers.

Need help using the site or want to learn more about recent changes?  Visit the Technical Help Using PatientsLikeMe Room.

THIS MONTH’S SITE IMPROVEMENTS

Thanks for your continued feedback about improving the site. Here are our top functionality enhancements for October.

A Popup Window for Entering Side Effects at PatientsLikeMe

In August, we changed the way we capture attributions – or the links between any two health concepts, such as treatments and side effects. As we watched you use these new features, we learned some valuable lessons about what makes sense to you from a user perspective and what is missing from a research perspective.  As a result, we’ve recently improved how we capture and reflect the data you’re entering so it’s done in the most meaningful way. See the full Release Notes for details on these recent changes to how you capture and share symptoms, side effects, “causes” and more.


Competing Against MS: An Interview with MLR

Posted October 28th, 2011 by

PatientsLikeMe member MLR was an avid BMX (Bicycle Motocross), MTB (Mountain Bike Racing) and Motocross athlete his entire life – until he was diagnosed with multiple sclerosis (MS) last year. After having to give up the sport he loved, MLR began to suffer from depression. Today, however, he’s happy to report that he’s racing again thanks to an amazing turn of events. Check out his incredibly moving story below.

MLR Racing Again After the BMX Community Gave Him the Surprise of His Life

1.  How did you and your family react to your MS diagnosis?

It was very tough when we found out it was MS that was causing all these problems and keeping me from training and racing. My family traveled with me always, and it was like going on vacations every month. We were a racing family.

2.  How have you adjusted to living with MS – and what tips do you have for newly diagnosed MS patients who identify as athletes?

The hardest part for me was accepting the fact that I was not going to be able to race and do most of the things I had done for so many years. But my family didn’t give up on me like I did. They pushed me through the depression, and my faith in God carried me through my deepest valleys and set me on the mountain tops to see what my life could still be. As athletes, we just have to keep that drive. We have to compete and make adjustments and keep competing. Compete against the odds and against MS itself.

3.  You have a new gravity downhill wheelchair that you’re racing now.  How did that come about, and what’s it like to race in one?

My new gravity wheelchair is a blast! It was built by Active Force Foundation, with four wheel independent suspension (6.5″ of travel), four wheel disc brakes and all built out of aluminum. It is so fun to ride and race.

MLR and Friends Showing Off the 4Cross DH Gravity Wheelchair

The greatest thing about this chair is how I received it. My two daughters started talking to people in our sport of BMX about my disease and how it had really taken its toll on me and how depressed I was that I couldn’t ride a bicycle any more. So over about a year to a year and a half, the whole BMX sport joined with them and raised the $11,000 to buy me this 4Cross DH chair. When they presented me with the concept of getting this chair, I was overwhelmed at the love and support from not only my two awesome daughters but also from my fellow racers and BMX family. The family of BMX is worldwide. Needless to say I cried like a baby for the support and love I felt from these wonderful people.

I ride my awesome DH chair every chance I get.  Although they aren’t very many races for these chairs, I have so much fun showing up to race events and showing the chair off and letting people sit in it and sometime letting people get pushed around a parking lot in it. So if you ever get a chance to go see some BMX racing or you know someone in BMX, know that it is a great sport and the people are a loving and caring group. By the way, BMX is an Olympic sport, and you can see it again in the 2012 London Olympic Games!


Announcing the “Calling All Types” Campaign for Diabetes Awareness

Posted October 27th, 2011 by

In June, we told you about our new partnership with BBK Worldwide, a pioneer in healthcare communications. Now, we’re excited to report that our first outreach project together is kicking off.

Visit CallingAllTypes.com, a Place for People with Type 1 and Type 2 Diabetes to Share Their Stories

In preparation for American Diabetes Month in November, PatientsLikeMe and BBK Worldwide announced today the launch of a new online diabetes health movement entitled “Calling All Types.” This innovative social health initiative encourages people with type 1 and type 2 diabetes to share their real-world experiences and help raise awareness of the disease, which affects 25.8 million children and adults in the US (or 8.3% of the population).

Are you a diabetes patient? Share your thoughts and stories at CallingAllTypes.com. Within seconds, social media outlets including Twitter, Facebook and YouTube will pick up and share your words across the Internet. The goal is to create instantaneous viral awareness that will inform the public, including policy makers and health professionals, about the real toll diabetes takes on individuals and families.  (Check out the video below to learn more.)

In addition to rallying supporters at CallingAllTypes.com, the campaign is focusing much of its initial awareness-raising efforts in Atlanta, Georgia, where diabetes prevalence exceeds the national average by a full percentage point. “We are incorporating a “take a community by storm’ approach,” says Bonnie A. Brescia, founding principal of BBK. For each of the first 10,000 visitors to post a comment at CallingAllTypes.com during November, the campaign will donate $1 to the Atlanta chapter of the American Diabetes Association.

So if you’ve got something to say about diabetes, the fastest-growing chronic disease in US history, don’t hold back. Spread the word today at CallingAllTypes.com. Then, if you haven’t already, join the diabetes patients at PatientsLikeMe who are coming together to share experiences, find others like them and take control of their health.


Moving Genetic Data Discovery Forward

Posted October 26th, 2011 by

In August, we proudly announced that PatientsLikeMe Research Scientist Catherine Brownstein, PhD, MPH, had won a prestigious “Young Investigator Award” from the International Congress for Human Genetics (ICHG). As promised, here is Catherine’s first-person report from the conference, held October 11-15, 2011, in Montreal.

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12th International Congress of Human Genetics

The 12th International Congress for Human Genetics (ICHG) was a fantastic learning experience with 7,200 geneticists, doctors and researchers in attendance – making it the largest ICHG ever.  The talks were of the highest quality, and the latest genetics research was presented and discussed.  It was an honor to give one of these presentations, since only 8% of those who applied were awarded the opportunity.

That brings me to the main purpose of this blog post: A big THANK YOU to the members of PatientsLikeMe. Your data made our presentation possible. I spoke about the ALS pilot program for genetics entry and search functionality, which allows ALS patients to enter their causative genetic mutations (such as SOD1 A4V, SOD1 D90A and VAPB P56S) and find others with the same genetics. It was a groundbreaking project, and we hope to implement it site-wide in the near future.

I also presented some of the key results from our recent survey on genetic testing:

  • 16% of you have had some form of genetic testing.
  • Of those who have been tested, 31% have had a direct-to-consumer genetic test.
  • If cost were NOT a consideration, 83% of you would be at least moderately interested in getting a comprehensive personal genetic test.
  • 68% of you said you would be at least moderately interested in finding others with the same genetics as you.

Thanks again for your participation in the survey, for being members of PatientsLikeMe and for sharing in our research efforts. I hope that next year I’ll be presenting PatientsLikeMe’s site-wide genetics functionality.

PatientsLikeMe member cbrownstein


Reflecting on National Disability Employment Awareness Month

Posted October 25th, 2011 by

Have your health conditions ever caused you to lose a job? Or prevented you from applying – or getting hired – in the first place?

October is National Disability Employment Awareness Month, an event that aims to recognize the skills that those with disabilities bring to the workforce and promote employment opportunities and access for those with disabilities. The issue, of course, is that discrimination, employment barriers and higher rates of unemployment remain ongoing concerns for Americans with disabilities.

October Is National Disability Employment Awareness Month

Here’s what the White House’s Presidential Proclamation has to say about these troubling statistics:

“More than 20 years after the signing of the Americans with Disabilities Act (ADA), individuals with disabilities, including injured veterans, are making immeasurable contributions to workplaces across our country.  Unfortunately, the unemployment rate for people with disabilities remains too high — nearly double the rate of people without disabilities — and reversing this trend is crucial.” – President Barack Obama

Last week, we featured a post about wheelchair barriers and hazards and asked readers to appraise their neighborhood for wheelchair accessibility. Today, we ask you to think about the barriers to employment that might exist for people with disabilities – both physical and mental – in your workplace. Would you say your work is “supportive” and “inclusive,” as the Presidential Proclamation states is the goal?

Whether you’ve faced job discrimination or noticed a potential barrier at work, we encourage you to share your stories in the comments section.


Photo of the Week: Angels in Motion

Posted October 24th, 2011 by

Please meet ALS patient sillyangel, who led a PatientsLikeMeInMotion-sponsored team at the Walk to Defeat ALS in Des Moines, Iowa, on October 8, 2011. As you’ll see, she proudly wore her bright blue PatientsLikeMeInMotion t-shirt to stand out in the crowd.

Sillyangel at the Walk to Defeat ALS in Des Moines, Iowa

Congrats to sillyangel and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your condition. We’re honored to support you along your journey.  For more PatientsLikeMeInMotion team photos, check out our new Flickr slideshow.

Organizing a team for this fall – or next spring?  Sign up for PatientsLikeMeInMotion today.


H@cking Medicine: Open Up!

Posted October 21st, 2011 by

hackingmedicineThis weekend, MIT is hosting the first H@cking Medicine conference and PatientsLikeMe is proud to be a sponsor. The hacking encouraged here isn’t malicious, rather, it refers to a passionate subculture of computer programmers who believe in sharing, openness, and innovation (among other things).  Those are three concepts near and dear to us here at PatientsLikeMe.

The goal of the conference is to inspire new ideas and create new relationships so that everyone will leave invigorated and excited about improving healthcare.  According to the H@cking Medicine website, “By using available tools in unconventional ways, we aim to revolutionize delivery of care, empower patients, and design new models of care. Typically, healthcare innovation is painfully slow and, even worse, often increases the cost.  We can make a difference by creating cost-effective solutions without waiting for fundamental advances in science.”

To kick off the event on the first day, our own Jamie Heywood (keynote) as well as other leaders in the health care field will inspire audience members with ways to find and learn from the best use of openly shared data. The second day is dedicated to team hacking, and gives coders a practical look at what can be done with the available resources.

Read more about this subculture of hackers on Wikipedia and follow the H@cking Medicine conference updates on their website and Twitter.


Watch Our Very Own “Humanitarian of the Year,” Dr. Paul Wicks, PhD

Posted October 20th, 2011 by

2011 Humanitarian of the Year Award Trophy Presented to Dr. Paul Wicks, PhD

In August, we proudly announced that our Research & Development Director, Dr. Paul Wicks, PhD, had been named “Humanitarian of the Year” and a TR35 Honoree by MIT Technology Review magazine. This week, he received both awards at MIT’s annual Emtech event, a two-day conference focused on emerging technologies held at MIT’s Boston campus.

Below are links to a few videos highlights from the event, including the award presentation on Tuesday night. As you’ll hear in the organizer’s introduction, the criteria for TR35 (the best young innovators under the age of 35) is to recognize individuals who are doing transformative work. “They are presenting a concrete solution to a big, almost ideally civilization-scale problem.” MIT Technology Review then names one TR35 recipient as “Humanitarian of the Year” to recognize the use of technology in “progressing the human condition.”

What does Paul have to say about receiving this incredible honor? Jump to the 3:40 mark in the video below to see his onstage interview and award presentation.

You can also get a quick glimpse here of TR35 recipients’ work on emerging technologies in health care or hear more in-depth from Paul and fellow award winners in this 40-minute panel discussion.


Recognizing Breast Cancer Awareness Month

Posted October 19th, 2011 by

Have you been seeing pink this month – such as on the lids of your Yoplait yogurt? That’s because it’s National Breast Cancer Awareness Month, a partnership of numerous organizations working together to promote breast cancer awareness, share information on the disease and provide greater access to screening services.

October Is National Breast Cancer Awareness Month

Here at PatientsLikeMe, we have 147 patients reporting breast cancer as well as 10 patients reporting inflammatory breast cancer (IBC), a rare but very aggressive form of the disease. Notably, 93% of our breast cancer patients are female, and 7% of them are male. (Although breast cancer primarily occurs in women, it can occur in men too, with approximately 1,910 new cases per year in the US for men.)

Given that breast cancer is the second most common form of cancer for women (after skin cancer), we know there are many more breast cancer patients and survivors out there than our membership numbers show. That’s why we encourage anyone affected by breast cancer to join PatientsLikeMe and share your treatment data to help others. For example, what was your experience with radiation or lumpectomy? What tips would you give other patients? These are the types of invaluable data points you can share here.

Finally, we’d like to leave with you a glimpse into the life of a real breast cancer patient who has battled the disease three times – as well as multiple sclerosis. Read our candid interview with TysabriSept08 in honor of National Cancer Survivors Day this past June.


Creating Wheelchair Awareness Through Photos

Posted October 18th, 2011 by

For someone who uses a wheelchair, there are barriers and hazards everywhere – things that others may not see. But how do you raise visibility of the issue?

Wheelchair Barrier 1:  A telephone pole occurs every 100 feet in the middle of sidewalk in Gamma's neighborhood, preventing those using wheelchairs from passing.

One of our longtime MS members, gamma, decided that a photo essay of the obstacles that exist in her neighborhood (considered a wheelchair-friendly community) and others would the best way to illustrate the problem. “My hope is that when this presentation is completed I can get it into the hands of people that can use it to raise awareness about unsafe situations for the wheelchair or stroller user,” she says.

Wheelchair Barrier 2:  This intersection has no "sloped curb," therefore anyone using a wheelchair cannot get from the street level to the sidewalk level.

What’s an example of a hazard or barrier? Wheelchair users at PatientsLikeMe – who number more than 1,300 and use both powered and manual wheelchairs – report having difficulty with potholes, cobblestone entrances, uneven sidewalks, narrow aisles, yellow bumps on ramps, heavy doors and more. But it’s easier to “see” these hazards and barriers than just list them. That’s why gamma is calling for photo submissions.

Wheelchair Barrier 3:  Many homeowners do not realize that putting their trashcan in the middle of the sidewalk blocks access for wheelchair users.

Have you encountered something in your neighborhood that would pose problems for a wheelchair user? Snap a photo to aid this grassroots patient project. Then send it to shalegamma@aol.com along with your full name for credit. Thanks in advance for your contribution!


What Patients Are Saying About Physical Therapy

Posted October 13th, 2011 by

October Is National Physical Therapy Month, Sponsored by the American Physical Therapy Association (APTA)

Mobile.  Active.  Independent.  How close are you or the patient in your life to those attributes?

October is National Physical Therapy Month, which is designed the highlight the role of physical therapy (PT) in restoring and improving motion.  According to the American Physical Therapy Association (APTA), the benefits can include enhanced quality of life as well as avoiding surgery or the long-term use of prescription medications.

The theme for this year’s event is Sports Injury Prevention Across a Lifespan.  “Participating in sports the right way is the key to avoiding injuries that can sideline you for a significant amount of time,” writes the APTA.  Learn more about preventing sports injuries and the role of PT at www.MoveForwardPT.com.

Here at PatientsLikeMe, 700 patients report using PT as part of their treatment regimen, and nearly 300 of them have submitted treatment evaluations of their experience.  The most common reported dosage is “weekly,” and the most common reported reason for having PT is stiffness/spasticity.

What do these patients have to say?  Here’s a sampling of their feedback:

  • “I had not realized how badly I walked and moved until my PT evaluation and treatment. PT has helped me regain muscle movement and has helped the leg/foot pain go away.” – Patient with Parkinson’s disease
  • “If it tires you, stop. Do only light, non-resistant exercise. If it tires your muscles or causes pain, tell them immediately. Pain is not gain, it is loss of function.” – Patient with primary lateral sclerosis (PLS)

  • “PT actually does help in building up weakened muscles, especially in my legs. I am very sore after I leave, though. It works itself out after an hour or so at home.” – Patient with fibromyalgia
  • “I am walking better with and without the walker.  I work out for an hour and fifteen minutes a day now. Monday, Wednesday and Friday with therapist, and the other four days alone.  I WILL WALK ALONE AGAIN.” – Patient with MS

Have you tried PT? Share your experiences at PatientsLikeMe today.


Photo of the Week: Little People in Motion

Posted October 12th, 2011 by

Please meet the youngest supporters of MS member Not Awake, who led a PatientsLikeMeInMotion-sponsored team at a Walk MS event in Springfield, Missouri, this spring. Although our bright blue t-shirts are offered in adult sizes only, you’ll see that this young fellow was able to wear a creatively adapted version nonetheless.

Youthful Supporters 2011 Walk MS Event in Springfield, Missouri

Congrats to Not Awake and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your condition. We’re honored to support you every step of the way.  For more PatientsLikeMeInMotion team photos, check out our new Flickr slideshow.

Organizing a team for this fall – or next spring?  Sign up for PatientsLikeMeInMotion today.


Tell the World: Visiting the Comal County Parkinson’s Support Group Symposium

Posted October 11th, 2011 by

I recently had a chance to speak about PatientsLikeMe at the 3rd Annual Comal County Parkinson’s Support Group Symposium, held in New Braunfels, Texas, on Saturday October 1, 2011.  Both the event and the support group were started by one of our longtime members, daddytom, who’s been part of PatientsLikeMe since 2007.  As daddytom said:

In July 2007 after much prodding from my bride…and my neurologist, I started the Comal County Parkinson’s Support Group. Thought I’d get it going then bow out after three or four months…Three and a half years later we have grown from six people to having over 160 folks registered with us…We have gone from meeting once a month to twice a month…What started as a laborious project has turned into a project of love.”

PatientsLikeMe Patient Experience Manager Kate Brigham (Center) with a Group of PatientsLikeMe Members

This year’s symposium featured presentations by two neurologists, Dr. Vikki Alvarez and Dr. Michael Merren, as well a presentation by a local speech pathologist. It was a great event to help educate and support Parkinson’s patients and their families in the Comal County area.

The audience included roughly 100 people, primarily Parkinson’s patients and their caregivers. I had a chance to meet a group of PatientsLikeMe members, and it was great to hear them talk about some of the ways they use PatientsLikeMe – as a support system, as a place to ask and answer questions from other ‘Parkies’ and as a resource for finding out more about what to expect as their Parkinson’s disease progressed.

What a great experience to meet some PatientsLikeMe members face to face.  While we can’t be at every support group meeting, we’ve produced some great materials to help you talk about PatientsLikeMe with your own support group.  Visit the Tell the World! page to find PatientsLikeMe flyers, slide decks and business cards.

PatientsLikeMe member kbrigham


Get Healthy for Good: An Interview with Catie Coman of the National Psoriasis Foundation

Posted October 7th, 2011 by

Catie Coman, Director of Communications, National Psoriasis Foundation

In August, we recognized Psoriasis Awareness Month on our blog and shared some facts and figures about this autoimmune disease, which affects 7.5 million Americans. One of the statistics we shared is that psoriasis often occurs in conjunction with other serious health conditions, including diabetes, hypertension, heart attack and obesity.

What these conditions share is that they can often be improved by reaching an ideal body weight. But losing weight – and maintaining it – is easier said than done. That’s why the National Psoriasis Foundation has launched the Healthy for Good campaign. Here’s what Catie Coman, Director of Communications at the National Psoriasis Foundation, tells us about this new online program.

1. What is Healthy for Good, and why should patients join in?

Healthy for Good (www.healthyforgood.org) is program designed to help people lose weight, while raising funds for a cure for psoriasis and psoriatic arthritis. It’s unique in that is uses a public platform and the fundraising tactic of “friends asking friends” to help people reach their goals.

Forty percent of people with psoriasis have metabolic syndrome, a cluster of conditions such as high blood pressure, diabetes and abdominal obesity. By joining Healthy for Good, they’ll get tools to stay motivated, lose weight and reduce their risk factors for these associated conditions. They’ll also be able to support research to find a cure for psoriatic diseases.

2. How will Healthy for Good reduce the risk factors for these conditions?

Healthy for Good may reduce the risk factors for these other serious conditions by providing participants with a platform to lose weight safely and set achievable goals. Healthy for Good supports a weight loss goal of up to two pounds per week. Participants will make a commitment to eat right and exercise—and reduce their risk for other serious diseases while they get healthy.

3. How is this program different from other health and fitness campaigns?

First, it gives people a chance to go public. Research shows that people are far more likely to achieve a goal when they put their reputation on the line—by publicly announcing their intentions. Healthy for Good helps people be accountable by giving them a platform to broadcast their commitment.

Also, it will help people stick to their resolution by asking others to support their efforts. For every pound that someone commits to lose, they will ask loved ones to donate $1, $5, $10 or more to help the National Psoriasis Foundation find a cure for psoriasis and psoriatic arthritis.

Participants will track their progress each week, and the Healthy for Good tracker will calculate their overall progress toward their goal. In order to help people stay motivated, each person who meets their weight-loss and fundraising goals will be entered to win prizes.

4.  Is Healthy for Good only available to psoriasis patients or can anyone join?

Anyone can join Healthy for Good. People without psoriasis and psoriatic arthritis can use this program to overcome weight loss obstacles and lose the pounds, while helping others at the same time. And it’s a great way for people with psoriasis and psoriatic arthritis to get healthy, reduce their risk of other serious associated diseases and raise funds to find a cure.

PatientsLikeMe member mcotter