16 posts from August, 2011

Photo of the Week: Newly Diagnosed Patients in Motion

Posted August 31st, 2011 by

For a newly diagnosed patient, organizing a run/walk/bike team sponsored by PatientsLikeMeInMotion can be a way to take action, “go public” and make new connections. Please meet Monkey Mamma, who was diagnosed with epilepsy last year, at the Epilepsy Foundation‘s Stroll for Epilepsy on April 9, 2011, in Dallas, Texas.

Monkey Mamma and Supporter Wearing Bright Blue PatientsLikeMeInMotion T-shirts

Congrats to Monkey Mamma 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?  Sign up for PatientsLikeMeInMotion today


Scoring with ATEC on PatientsLikeMe: New Feature for Patients with Autism

Posted August 30th, 2011 by

When we expanded PatientsLikeMe from serving a couple dozen conditions to serving several hundred overnight, we realized very quickly that our work was only just beginning. Since that early morning in April, our members (and staff) have added a lot more data to the system, including core symptom groups and commonly prescribed treatment surveys for hundreds of conditions. Last week, we added a new outcome score for Autism Spectrum Disorder (ASD), a rapidly growing population in our community.

ATEC Screenshot

Now, all patients with an Autism Spectrum Disorder (including Asperger’s Syndrome or PDD-NOS) have the ATEC outcome score available on their profile. The ATEC (or Autism Treatment Evaluation Checklist) is a survey developed by the Autism Research Institute to help parents of children with autism record communication, sociability, sensory awareness and behavior.

The saying goes, “if you’ve met one child with autism, you’ve met one child with autism.” Given the heterogeneous nature of the condition, it’s extremely difficult to find two similar patients with autism. That said, on PatientsLikeMe, patients and caregivers can find and connect with others based on a number of criteria, including age and location, individual symptom scores, treatments taken and now an ATEC score that relates to overall level of function.

Below is a screencast featuring the ATEC and the new patient “nugget” for members with an Autism Spectrum Disorder (as well as changes we made to our QuickStart Guide for caregivers).

By receiving scores for each individual component of the ATEC, you can choose which areas you should explicitly target in therapy. We encourage all of our members managing an Autism Spectrum Disorder to take the ATEC to find out more about your condition and how you can improve your outcomes.


A Peek at Our August Newsletter for Members

Posted August 29th, 2011 by

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

Ever reviewed a product on Amazon? Or rated a restaurant on Yelp? If so, then you know your experiences matter – and that they can help someone else make the right decision.

It’s the very reason there are “treatment evaluations” at PatientsLikeMe. There are so many difficult choices when it comes to treatment. Many of you talk about weighing the benefits and risks when starting, stopping or changing treatments. Oftentimes, this is something you have to revisit repeatedly throughout your journey.

Sample Treatment Evaluation at PatientsLikeMe

Whether your treatment is working wonders or has no noticeable effects, your treatment evaluation can help so many others like you make up their mind. Got something you’d like to share about your past or present treatments?

Kate, Emma, Liz, Jeanette & Sharry

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

JOIN THE CONVERSATON

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

THIS MONTH’S SITE IMPROVEMENTS

Thanks for your awesome feedback as we continue to improve our site. In this section, we’ll keep you up-to-date on new features designed to make your PatientsLikeMe experience even better. Here are our top functionality enhancements for August.

SYMPTOMS, SIDE EFFECTS AND THEIR CAUSES

We’re excited to share some big changes to the way you record symptoms and side effects – all based on your feedback. You told us you wanted to better see the connections between items on your profile. For example, sometimes a symptom may be a side effect of a treatment, or the cause of another symptom, but we didn’t have a good way to show that. Now we do, and we think it’ll allow you to share even more insights.

New Feature That Allows You to Indicate What Caused Your Symptoms or Side Effects

Check out this screencast for a visual tour of these important changes.

REASONS FOR TREATMENTS AND HOSPITALIZATIONS

In a related change, we’ve made it easier to add the purpose for a treatment or the reason for a hospitalization. Just like adding the cause of a side effect or symptom, you can now add the “why” part of the story without leaving your profile page. Simply click the “plus symbol” icon next to a treatment or hospitalization listed on your profile and type in your answer in the pop-up window. Done!

Enter a Treatment Purpose Without Leaving Your Profile Page Thanks to This Convenient Popup


PatientsLikeMe’s Catherine Brownstein, PhD, MPH, Wins “Young Investigator Award” from the 12th International Congress of Human Genetics

Posted August 25th, 2011 by

PatientsLikeMe Research Scientist Catherine Brownstein, PhD, MPH, Winner of a "Young Investigator Award" from the 12th International Congress of Human Genetics

The spotlight is on PatientsLikeMe’s research team this week – and deservedly so.

On Tuesday, Research Director Paul Wicks, PhD, was named “Humanitarian of the Year” and a TR35 Honoree by MIT Technology Review. Now, we are extremely proud to announce that PatientsLikeMe Research Scientist Catherine Brownstein, PhD, MPH, has won a Young Investigator Award from the 12th International Congress of Human Genetics (ICHG).

Held in Montreal, Canada, from October 11-15, 2011, the ICHG is the foremost meeting of the world human genetics community and takes place every five years. The anticipated attendance is 7,000 delegates from over 60 countries around the world. As part of her award, Dr. Brownstein will give a presentation entitled “An internet-based approach to enhance genetic data discovery in ALS” and receive complimentary registration to the five-day conference.

Just how difficult it is to win an ICHG Young Investigator Award? Dr. Brownstein was one of only 64 geneticists selected out of 770 applicants. In addition, her scientific abstract was one of 324 selected for presentation out of 3,932 submitted abstracts. In our book, that puts her in the top 10% of geneticists in the world.

Congratulations to Dr. Brownstein on this prestigious achievement. We look forward to publishing her report from the ICHG on the blog this fall.


Photo of the Week: Pedaling for Parkinson’s

Posted August 24th, 2011 by

Meet Cidney, a PatientsLikeMe member with Parkinson’s disease who recently took part in RAGBRAI (The Register’s Annual Great Bicycle Ride Across Iowa). Started in 1973, this annual seven-day bicycle ride is the oldest, largest and longest event of its kind.

Cidney Dipping Her Bicycle in the Mississippi River after Finishing RAGBRAI

Here’s what Cidney, who lives in Las Vegas, Nevada, says about her experience:

“Well I did it.  Actually I only did half of it (it being RAGBRAI).  The heat was intense so I rode from the halfway point each day.  That was still about 30 to 40 miles each day.  Now I’m a Vegas girl and I know about heat, but I didn’t know much about humidity. Now I do and I’ll take the dry heat in Vegas any day.  But despite the intense heat and HILLS (Iowa is not flat), I had an incredible experience.  I had never done anything like this before, and it was all I had hoped for.

There were 72 people in the Pedaling for Parkinson’s group. Some were elite cyclists, some were recreational cyclists who came to support Parkinson’s research, and six of us were people with Parkinson’s (PWP). I had the opportunity to talk to many people while riding.  We had great jerseys that people noticed and would ask us about our connection to Parkinson’s disease.  Many were shocked when I told them that I had Parkinson’s.

The best part of the week was getting to know the other five PWP.  They are amazing people with courage and determination, and they were just plain fun to hang around with.  Who said PWP can’t have fun?  So it was a week to remember.  There’s something about riding till your muscles ache and sweating till you’re soaked.  I think it’s more of the sense that Parkinson’s may get part of me, but it won’t get the best of me.”


PatientsLikeMe’s Paul Wicks Ph.D. Named Humanitarian of the Year and TR35 Honoree by MIT Technology Review

Posted August 23rd, 2011 by

CAMBRIDGE, MA–(Marketwire – Aug 23, 2011) – Today, PatientsLikeMe‘s Research Director, Paul Wicks Ph.D., was named a TR35 Honoree and spotlighted as Humanitarian of the Year by MIT Technology Review magazine, which profiled him in an in-depth article and video. The TR35 list recognizes the world’s top innovators under the age of 35, spanning medicine, energy, computing, communications, nanotechnology, and other emerging fields.

Photo credit:  Steve Moors, MIT Technology Review

“Technology innovation is key to driving growth and progress in the areas of research, medicine, business and economics,” said Jason Pontin, editor-in-chief and publisher of Technology Review. “This year’s group of TR35 recipients is driving the next wave of transformative technology and making an impact on the way we live, work and interact. We look forward to profiling and working with these technology leaders each year, and watching their continued advancement in their respective fields.”

Dr. Wicks has been honored for his work in connecting patients to advance real-world understanding of their diseases. A neuropsychologist by training, Dr. Wicks first became involved in online communities through BUILD-UK, an online forum for people with ALS in his native United Kingdom. He joined PatientsLikeMe in 2006, where he has architected the website’s medical framework that is currently being used by 110,000+ patients with more than 1,000 conditions. The work of Dr. Wicks and the PatientsLikeMe research team has been published in dozens of scientific articles, including the most recent in Nature Biotechnology on accelerating clinical development that reported on the effect of lithium on ALS.

“Paul has made a real difference in thousands of patients’ lives and helped to build a system that is transforming healthcare,” says Jamie Heywood, Co-founder and Chairman of PatientsLikeMe (and MIT alumni). “All of us at PatientsLikeMe are thrilled that he has been honored with both prestigious awards.”

Chosen by a panel of expert judges and the Technology Review editorial staff, who evaluated more than 300 nominations, Dr. Wicks will receive his award at the emtech MIT 2011conference held at the MIT Media Lab in Cambridge, MA from October 18-19, 2011. All of the 2011 TR35 winners will be featured the September/October issue of Technology Review and online at www.technologyreview.com/tr35/.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on www.twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]

About Technology Review, Inc.
Technology Review is an independent media company owned by the Massachusetts Institute of Technology (MIT). More than two million people around the globe read our publications, in five languages and on a variety of digital and print platforms. We publish Technology Review magazine, the world’s oldest technology magazine (established 1899); daily news, analysis, opinion, and video; and Business Impact, which explains how new technologies are transforming companies, disrupting markets, or creating entirely new industries. We also produce live events such as the annual emtech MIT conference.


What Do You Know About Psoriasis?

Posted August 22nd, 2011 by

August Is Psoriasis Awareness Month

Last week, we told you about the Spotlight on Psoriasis and Psoriatic Arthritis Online Film Festival and how you could participate. But for those of you who don’t have psoriasis and don’t know much about it, we wanted to tell you a little more about this chronic condition as August is Psoriasis Awareness Month.

An autoimmune disease affecting as many as 7.5 million Americans, psoriasis was recently in the headlines when reality star Kim Kardashian was diagnosed with the condition after developing red patches on her legs and torso. As she soon learned from her doctor during an episode of “Keeping Up with the Kardashians,” the disease is a lifelong one, and there is no cure. Her story also demonstrated the tendency for psoriasis to run in families, as her mother Kris Jenner also has the condition.

Like many people, Kardashian’s first reaction to the diagnosis was one of embarrassment and self-consciousness. Many people with psoriasis report that they have limited social activities, dating and the use of public swimming pools due to the often highly visible condition. In fact, a 2009 survey by the National Psoriasis Foundation found that nearly three-fourths of respondents say that psoriasis has had a negative impact on their quality of life.

The goal of Psoriasis Awareness Month is to highlight the life-altering impact of psoriasis and psoriatic arthritis and dispel the many myths surrounding it. With that objective in mind, here are a few quick facts to raise your knowledge.

Did you know that…

  • …psoriasis is a serious autoimmune disease that causes the skin to crack, itch and bleed?
  • …up to 30% of people with psoriasis will develop psoriatic arthritis, which causes pain and swelling of the joints?
  • …psoriasis is not contagious and cannot be transmitted through skin-to-skin contact?
  • …psoriasis often occurs with other serious health conditions, including diabetes, hypertension, heart attack, obesity and depression?

One of the best ways to better understand psoriasis is to get to know someone with the condition. Here at PatientsLikeMe, 318 patients report psoriasis, and 176 patients report psoriatic arthritis. Women are disproportionately affected, representing 69% of our psoriasis members and 82% of our psoriatic arthritis members. Across both conditions, one of the most commonly reported treatments is methotrexate (Trexall).

Learn more by checking out the profile of one of our psoriasis members today. Also, don’t forget about the Spotlight on Psoriasis and Psoriatic Arthritis Online Film Festival. Starting Tuesday, August 30th, anyone can watch and vote on submitted videos at www.psoriasis.org/pam.


ALS and Athleticism: What Have We Learned?

Posted August 18th, 2011 by

“Clinicians are used to seeing ALS patients who are or have been athletic. So is there a link, and if so, could exercise have a direct effect on the condition?”BMJ Group Podcasts

In 2010, PatientsLikeMe researchers collaborated with the University of Oxford Motor Neuron Disease (MND) Centre in the UK on a study about ALS handedness. What they discovered is that when ALS patients get symptoms in their arms first, they’re more likely to get them in their dominant arm. However, there was no correlation between lower limb onset and the dominant leg. This noteworthy research was presented at the ALS MND Symposium the same year.

BMJ Group Podcasts, Featuring Dr. Martin Turner

Recently, this paper was selected by the medical journal that published it as the “Patient’s Choice” article, meaning that it will be open access for all patients to read as well as the subject of a podcast. Tune in below to hear the podcast interview with the lead study author, Dr. Martin Turner, about what this research means and how it ties into his ongoing investigation of a possible connection between athleticism and ALS. (Jump to the 8:30 mark for his interview.)

Listen to the podcast interview with Dr. Martin Turner here.


I Will Not Be Quiet: An Interview with ALS Advocate Debra Quinn

Posted August 16th, 2011 by

ALS Advocate Debra Quinn with Her Husband and Caregiver Mike

Debra Quinn’s father, sister, aunt, grandmother and great aunt all passed away from ALS, and in 2009, she was diagnosed with ALS herself.  This hereditary form of the disease is called familial ALS (fALS).

After the loss of her younger sister in 2007, Debra decided that she could no longer stay silent.Today, she is “the voice for my children, nieces, nephews and cousins, all of whom have a 50 percent chance of inheriting ALS.”A featured speaker at National ALS Advocacy Day in Washington, DC, Debra is also the spokesperson for Hearts for ALS NY and an active member of the The ALS Association’s Upstate New York Chapter.As a result of her tireless activities, she was recently awarded the New York State Senate Liberty Medal.

After learning about her remarkable story, we reached out to Debra to find out a little more about her.Here is our interview with the indomitable Debra Quinn, one of more than 7,100 PatientsLikeMe members with ALS.

1.  How would you describe the impact of familial ALS on your family?

It has truly changed our lives. We always knew it was there, but until you are faced with it yourself, it just doesn’t seem real. We have two grown children who have a 50/50 chance of ALS and it is scary for them to watch the changes in me, knowing that could be them someday. With the onset of ALS early in age, it never leaves their thoughts.I was diagnosed in October of 2009 with early onset symptoms, and since Christmas, I have seen changes coming on faster.

2.  Tell us about your ALS advocacy work.  How did you get started, and why do you feel called to do it?

I started to give public presentations over a year ago about ALS and what it means to have this type of disease. In order for people to help, they must first understand what it is and how it changes a person’s body over the course of time. I went to DC in May and was able to speak out about familial ALS, which is only 5-10% of all ALS cases.

Teaching the general public that familial ALS happens again and again and again really drums home the challenges that we must face with this inherited disease. Proving that ALS does not skip a generation, we have traced it back to the early 1600s and learned that more than 20 of my father’s ancestors had ALS.

In January of 2011, several supporters of ALS stated a nonprofit organization called Hearts for ALS NY, and I volunteer as their spokesperson.My advocacy role comes straight from my heart. I speak to anyone who will listen as we have a unique story that must be shared. My goal is to speak nationally about this disease and not stop until we have a cure on the table.

When you come from a familial ALS family, it just keeps attacking again and again.  Watching my little sister die of ALS and not having the help we needed to take care of her, I refuse to be quiet about this disease as it needs to be talked about and shared with others. So many feel that they must lay down and die once they hear the three-letter word, ALS, and that is not true today with all the assistive equipment that is out there for people with ALS.

3.You received the New York State Senate Liberty Medal in June 2011.  What does this recognition mean to you?

I was really honored to receive the New York State Senate Liberty Medal. This is for all the people who have supported me and joined me in the fight against ALS. I’d also like to thank Senator Catharine Young for her support of the ALS community. ALS seems to be the secret disease that has no outspoken person to really tell the world exactly what ALS is and how to live with this horrific disease each day. I’m proud to be raising awareness of this disease and be the voice of others. I will never, ever give up.


Put Your Psoriasis Story on Video

Posted August 15th, 2011 by

The most common autoimmune disease in the US, psoriasis affects as many as 7.5 million Americans. Yet many people think it’s just “a skin thing.” To help debunk this misunderstanding and show all the ways psoriasis impacts one’s life, the National Psoriasis Foundation is holding the first-ever film festival for psoriasis and psoriatic arthritis, a painful joint condition that up to 30 percent of people with psoriasis develop.

Spotlight on Psoriasis and Psoriatic Arthritis Online Film Festival, August 30th - September 6th

The Spotlight on Psoriasis and Psoriatic Arthritis Online Film Festival invites you to show what life is really like with psoriatic disease, including all the ups and downs, frustrations and realizations. Not sure how to get started? You may want to think of a genre for presenting your story first. The festival invites submissions in seven different categories: action, youth, animation, horror, comedy, documentary and music video.

All videos submissions are due on August 28, 2011. Two semi-finalists will be chosen in each category for online voting by the public, beginning on August 30, 2011. Anyone with any condition can watch the videos and vote on their favorites. Then on September 6, 2011, the video with the most online votes across all seven categories will be named the Festival Grand Prize winner and take home a $500 Visa gift card.

For festival FAQs, rules and regulations, and to submit your video, visit www.psoriasis.org/pam.


Photo of the Week: Wheels in Motion

Posted August 11th, 2011 by

A number of our ALS and PLS members use wheelchairs, but that doesn’t keep them from participating in awareness walks sponsored by PatientsLikeMeInMotion. Please meet Power Mom, a grandmother of six who led a team at the Walk to Defeat ALS in Long Island, New York.

Power Mom's Team at the Walk to Defeat ALS in Long Island, NY

Congrats to Power Mom and all of our 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?  Sign up for PatientsLikeMeInMotion today.


Three Ways to Stand Up to Cancer in August

Posted August 9th, 2011 by

Stand Up To Cancer

Stand Up To Cancer (SU2C) was founded in 2008 to mark “where the end of cancer begins.” Since then, the organization has raised over $100 million for cancer research through television specials and other fundraising efforts.

SU2C aims to become an unstoppable movement, to accelerate groundbreaking cancer research and to bring together the best and brightest in the cancer community through collaboration instead of competition. This is done through two types of unique grants: Dream Team Grants given to multi-institutional groups that work collaboratively and Innovative Research Grants given to high-risk projects that could potentially be high impact.

Ready to stand up to cancer too? There are three ways during the month of August.

1. USE YOUR MASTERCARD AT RESTAURANTS
SU2C has partnered with MasterCard for a program called “Eat, Drink and Be Generous” that runs through September 1, 2011. Simply use your card for dining out (or taking out), and MasterCard will make a donation to SU2C, for a total of up to four million dollars.

2. SHARE A PRICELESS MOMENT ON FACEBOOK
“Cancer holds a magnifying glass to our everyday lives,” writes SU2C. So what does your everyday life look like? Share a snapshot on the MasterCard Everyday Moments Facebook App, and MasterCard will donate $1 to SU2C, for a total of up to $100,000.

3. MAKE A DONATION ANYTIME YOU WANT
If you’re feeling extra generous, make a one-time donation or a set up a recurring donation plan with SU2C. 100% of your donation will go towards saving lives through out-of-the-box research grants to underfunded scientists.


Spolighted Blogger: Mollee Sullivan of My Broken Stomach

Posted August 8th, 2011 by

Blogger Mollee Sullivan of My Broken Stomach, a Blog about Gastroparesis

Recently, it came to our attention that one of our members has an outstanding blog called My Broken Stomach, in which she chronicles her experiences with gastroparesis.

We reached out to hear to learn a little more about her as well as how she’s managing her condition, which causes partial paralysis of the stomach. (As a result, food stays in the stomach longer than normal, and patients may experience symptoms ranging from premature fullness to nausea to unplanned weight loss.)

What advice does this popular blogger have for digital age patients? And how has PatientsLikeMe and the experiences of other patients helped her? Check out our interview with Mollee Sullivan below.

1. Where are you in your gastroparesis journey? What’s gotten you there?

It’s been just over a year since my diagnosis, and I feel like I’ve finally reached the point where I can say I’m managing my gastroparesis well. I know I still have a lot to learn, and I still have bad days, but I have many more good ones. There have been a lot of factors involved in getting me here: sticking to my low-fat, low-fiber diet; taking probiotics daily; exercising regularly; reducing stress; getting enough sleep; building a strong support system; and maintaining a positive attitude.

2. What have you gained from being a member of PatientsLikeMe?

I’ve gained access to a community of other individuals who have gastroparesis, and I have another tool for logging my symptoms, weight and treatments. It’s also interesting to see what clinical trials are going on for gastroparesis. I think PatientsLikeMe will become even more beneficial over time as more and more people join.

3. What’s the most important thing you learned from another patient with gastroparesis?

That it’s possible — and actually beneficial — to exercise when you have gastroparesis. At first, I was afraid I’d lose more weight or push my body too hard if I went running, but after talking with a woman who has gastroparesis and finished a marathon, I was inspired to get my running shoes back on. I completed a 10K this past spring and was able to maintain my weight; plus, I felt a lot better on the days when I went running. I’ve kept up a regular exercise program since then, and I plan to participate in the 10K every year.

4. What are your tips for living in the age of Health 2.0?

Get involved! There’s no reason to feel alone with gastroparesis or any other health problem these days with all the blogs and online support groups where patients can connect. Unfortunately though, some forums seem to be overrun with whiners, so use positive, reliable sites (like PatientsLikeMe) and find people on them who are encouraging. And while it can be helpful to read about what others are doing to manage their illnesses, ultimately you have to do what’s best for you.

Finally, don’t try to diagnose yourself on the Internet — every time I did that, it told me I was either pregnant or dying. (I’m neither.)


PatientsLikeMeOnCall: Living with Type 1 Diabetes

Posted August 5th, 2011 by

The Many Members of PatientsLikeMe

Welcome to the third installment of our new weekly podcast series called “It’s Friday – Let’s Journal Club.”

This week’s guest interview is with Sarah Taylor, a type 1 diabetes patient, registered nurse (RN) and friend of the company. Sarah stopped by PatientsLikeMe headquarters last Friday to talk about being diagnosed with type 1 diabetes at age nine and how PatientsLikeMe has become a part of her life today.

After this engaging “Journal Club” session, PatientsLikeMe’s Aaron Fleishman sat down with Sarah to learn more about how type 1 diabetes affects her day-to-day decisions – from eating to exercising – and how as a nurse she envisions shared patient data helping medical providers. Listen in below to hear what that might look like and also what advice she has for those who are newly diagnosed with type 1 diabetes.