The Value of Openness: The PatientsLikeMe Blog

When our members organize a run/walk/bike team sponsored by PatientsLikeMeInMotion, it’s often a family affair involving multiple generations. Below is a great shot of member Hapeone along with her daughter at the 2011 National Alliance on Mental Illness (NAMI) Walk in Dallas, Texas.

Congrats to Hapeone and all of our 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 inspiring PatientsLikeMeInMotion team photos, check out our new Flickr slideshow.

Organizing a team for this fall?  Sign up for PatientsLikeMeInMotion today.

As we mentioned in our blog post last week, our PatientsLikeMeInMotion program is off to a running start this year with more than 30 sponsored teams thus far. What does one of these run/walk/bike teams look like? Below is Team Sylvan, a 40-person team led by ALS patient Panda155.

Decked out in bright blue PatientsLikeMe t-shirts, Team Sylvan took to the streets for the ALSTDI Cure Is Coming Walk, held on May 7, 2011, in Lexington, Massachusetts. This is the third year that they’ve been sponsored by PatientsLikeMeInMotion, which makes them one of our veteran superstar teams.

Congrats to Team Sylvan and all of our 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 inspiring PatientsLikeMeInMotion team photos, check out our new Flickr slideshow.

Organizing a team for this fall?  Sign up for PatientsLikeMeInMotion today.

“When you have a child with special needs, you really start to feel like you’re constantly the squeaky wheel as you advocate for your child. After a while, you start to wonder…’is it me?’ But I’ve already found several other parent advocates who are going through the same thing.”

- Autism Caregiver

It’s Autism Awareness Month as well as IBS Awareness Month! Now that PatientsLikeMe has opened its doors to any patient with any condition, it’s amazing to see how many patients have joined our site in such a little amount of time. As we continue to add new members and conditions daily, helping us to expand beyond our recent milestone of over 100,000 members, here are some facts about autism and irritable bowel syndrome (IBS) from our members.

Autism

Membership

• PatientsLikeMe already has over 100 members with autism, even though autism patients and caregivers could only join PatientsLikeMe starting at the beginning of April.

What are the top treatments?

• Autism patients are using more than 150 treatments, including prescription drugs, supplements, over-the-counter medications, medical devices, lifestyle modifications, therapies, etc.
• The top lifestyle modification reported by our autism patients is Applied Behavioral Analysis, while Adapted Physical Education is the number one exercise cited.
• The most widely used prescription drugs reported by our autism patients are Levetiracetam (Keppra), Lamotrigine (Lamictal) and Albuterol.

What are the major symptoms?

• For more than 55 patient members, “Anxious Mood” was their first symptom of autism.
• The five most common primary symptoms reported include: Anxious Mood, Depressed Mood, Fatigue, Impaired Communication Skills and Insomnia.

IBS

Membership

• PatientsLikeMe already has over 270 patients with IBS, even though, like autism, IBS patients could only join PatientsLikeMe starting at the beginning of April.

What are the top treatments?

• IBS patients are using more than 600 treatments, including prescription drugs, supplements, over-the-counter medications, medical devices, lifestyle modifications, therapies, etc.
• The top lifestyle modification reported by our IBS patients is Rest, while Stretching is the number one exercise cited.
• The most widely used prescription drugs reported by IBS patients are Duloxetine (Cymbalta), Pregabalin (Lyrica) and Tramadol (Ultram).

What are the major symptoms?

• For more than 55 patient members, “Abdominal Bloating” was their first symptom of IBS.
• The five most common primary symptoms reported include: Abdominal Bloating, Abdominal Cramps, Anxious Mood, Constipation and Depressed Mood.

This Spring, as you’re out at disease-related fundraiser events, take note of the people in those bright blue t-shirts walking, running or biking by your side. Those are patients like you!

Since its launch in 2009, more than 1,700 people (including patients, friends and family members) have taken part in the PatientsLikeMeInMotion™ program to raise money and awareness for various conditions. Here are some fun facts about PatientsLikeMeInMotion and a video of some of our members who have participated.

2009 Quick Facts

• 2009 marked the debut of the PatientsLikeMeInMotion program.
• Approximately 40 PatientsLikeMe members signed up teams to participate in PatientsLikeMeInMotion and led more than 700 people on PatientsLikeMe teams across the United States.
• In its first year, the PatientsLikeMeInMotion program donated over $9,000 for charitable disease foundations such as the National MS Society (NMSS), Parkinson’s Alliance and the ALS Association (ALSA).
• The largest member team in 2009 was formed for the annual Parkinson’s Unity Walk in New York. It’s here where we first met and interviewed some of our members (see our YouTube page to meet them).

2010 Quick Facts

• A breakout year for the program, PatientsLikeMeInMotion doubled our number of sponsored teams from 38 in 2009 to 60 in 2010.
• PatientsLikeMe members led teams of more than 1,000 people total wearing the recognizable, bright blue PatientsLikeMeInMotion t-shirts to events across 15 states.
• Together, member-led teams raised more than $15,000 for their charitable disease foundations through PatientsLikeMeInMotion donations.
• PatientsLikeMe teams were present at 20 NMSS events and 12 ALSA events, as well as fundraisers run by The National Alliance on Mental Illness (NAMI), The Epilepsy Foundation of America and the Parkinson’s Unity Walk.
• PatientsLikeMe had the opportunity to sponsor Team Mid New England at the U.S. Transplant Games in Madison, WI (see highlights here.)
• In 2010, we also launched our PatientsLikeMeInMotion Flickr page to host all of the photos our teams have submitted over the years. Check it out.

So, what will 2011 look like for PatientsLikeMeInMotion? That’s entirely up to you! Do you have an awareness event in your area you would like to be a part of? Sign your run/walk/bike team up for PatientsLikeMeInMotion and count on us to support you – both online and off!

For patients with prevalent diseases, it may be easy to find others with your condition.  You meet them at clinics; you run into them when seeing your specialist; or you participate in one of the support groups in your area.  For those with rare diseases, the simple act of finding another patient like you isn’t always as easy.  You might be the only patient your doctor has seen with your condition.  Finding another patient often becomes a goal and sharing and learning from them a welcomed reward.

Alongside NORD and EURORDIS, we are celebrating Rare Disease Day and they’ve deemed this year’s theme “Rare, but Equal.”  At PatientsLikeMe, patients are patients, no matter what their condition.  Patients with rare diseases are sharing their health information alongside patients with more widespread conditions.

So, who do we have sharing information about their rare disease?  To date, more than 455 patients with Multiple System Atrophy and 122 patients with Progressive Supranuclear Palsy, both neurodegenerative disorders that mimic Parkinson’s disease, have joined our community.  Do you have Neuromyelitis Optica, the autoimmune inflammatory disorder affecting the spinal cord, optic nerve, that has lesions often misdiagnosed as multiple sclerosis?  There are 332 patients just like you.  Sharing right alongside these patients you’ll find 388 patients with Progressive Muscular Atrophy (a rare subtype of ALS which only affects the lower motor neurons) and 331 with Primary Lateral Sclerosis (a subtype of ALS which affects the upper motor neurons).

Many of you also know that we actually started PatientsLikeMe focused on the rare neurodegenerative disease, ALS.  Six years later, there are now more than 4,000 ALS patients-plus almost 20% of the newly diagnosed in the U.S. every month-sharing their journeys and learning from one another.  (You can read about highlighted milestones in our 2010 ALS Awareness Month blog.)  In 2011, we’ll continue our heritage of serving those with rare diseases by improving this overall experience of finding a “patient like me.”

There are no major awareness raising pink ribbons or yellow wristbands for these rare diseases.  But, there is a group of patients who have found each other, who are sharing with one another and the world their disease experience.  And, that will translate to accelerated research and better outcomes - two things we are hoping to make a little less rare.

Why does it feel like “second nature” for PatientsLikeMe to create innovative partnerships with nonprofits?   Nonprofit organizations are dedicated and centered around putting patients first - a concept that’s near and dear to us too.  In 2010, we focused on refining our nonprofit partnerships to bring more events and programs to patients, both online and off.  As you know from our blog last week, more patients like you sharing data on PatientsLikeMe leads to more learning and we are thankful to our nonprofit partners for helping us spread the word to bring in more patients.  Additionally, the more patients like you who know about and participate in nonprofit events and programs, the more funds raised for your research and awareness of your particular disease.

Below is a video and some details about how we worked with our nonprofit partners in 2010:

• We worked closely this year with the Myelin Repair Foundation on two of their new initiatives: Where are the Cures? and Breakthrough to Cures. We offered you a chance to ask questions and comment on their groundbreaking Patient Manifesto in our hosted forum, and blogged about their innovative brainstorming game designed to spark conversation about accelerating the pace of research.
• With the launch of our Transplants Community, PatientsLikeMe developed a special relationship with the New England chapter of the National Kidney Foundation. Lori Scanlon, Chris Fidyk, and I joined the staff and a team of transplant recipients, donors and their families to spread the word about PatientsLikeMe at the 2010 US Transplant Games in Madison, WI.  We hosted a booth at the Expo and were blown away by the spirit of the Games.  Thank you team PatientsLikeMe!
• There was no shortage of spirit at the Parkinson’s Unity Walk this year at Central Park in New York City.  Lori Scanlon and I met the PatientsLikeMe team walking to raise awareness and funds for The Parkinson’s Alliance.  You can meet some of them through this video created by Aaron Fleishman.  We were amazed by the enthusiasm and determination of the thousands of patients attending the walk with their friends and families.
• Nonprofit partner National MS Society (NMSS) of Greater New England worked hard this year to spread the word about PatientsLikeMeInMotion^TM to its patients - and you responded.  PatientsLikeMe teams increased sevenfold at their events and you helped raise an extra $2500 for NMSS.
• In addition, we talked about the Accelerated Cure Project’s repository for MS and NMO patients and talked about a number of awareness months/days, including most recently Worlds AIDS Day, Epilepsy Awareness Month, and Mental Health Awareness Week.

Stay tuned for exciting new programs in 2011 for you and your favorite nonprofit organizations. Creating exciting partnerships with nonprofits continues to be at the forefront in 2011 and we’re looking forward to launching new initiatives throughout the year.

Did you know that yesterday was Fibromyalgia Awareness Day?

The PatientsLikeMe Fibromyalgia community is growing exponentially with more than 3400+ members just five months after its launch!  Many  of our members are feeling newly empowered by their membership in our community and are attending events, wearing pins and ribbons and taking the time to spread awareness about what it’s like to live with fibromyalgia.

This sharing mirrors the sharing they do on the site. At PatientsLikeMe, members build their profiles by sharing information about their condition, such as symptoms and treatments.  Top treatments cited to date include rest, heating pads, walking, stretching and the drug Lyrica.  The most commonly listed symptom is pain, followed by fatigue, memory problems and lower back pain.  In addition to sharing health information, patient members also share their personal experiences and tips with each other.  In our forum these past few months, patients have discussed all kinds of topics, including finding the right doctor, coping with pain and fatigue and how to explain how they really feel to their friends and family.

With all this sharing, patients are learning more about themselves, helping each other better understand this condition, and improving their overall quality of life. In fact, in a recent survey amongst some of our members with fibromyalgia, 85% of our respondents agreed or strongly agreed with the statement - “I feel better about myself because of the recognition by others at PatientsLikeMe that my condition is real.”

If you are not already sharing and learning with other patients like you, we invite you to join our community here at PatientsLikeMe.

Did you know this April is both Parkinson’s Awareness Month and the 2-year anniversary of the PatientsLikeMe Parkinson’s community?  We invite you to celebrate with us all month as we share real-world patient insights and experiences of living with this disease…and we ask you to share on!

The PatientsLikeMe Parkinson’s community has come a long way since it launched in April 2007 - topping more than 3,400 patient members in just 24 months.  Our community members share so much about themselves on a daily basis - from details about how they manage their condition to their personal experiences and stories.  Why share?  Simply stated, to learn more about themselves while helping others better understand this condition.   In the spirit of awareness and sharing, this month we’ll share with you some of what we’ve learned so far from these inspirational individuals and keep it real with some personal patient stories about living with PD.

Additionally, later this month, PatientsLikeMe is once again sponsoring the Parkinson’s Unity Walk (www.unitywalk.org), “the largest single-day fundraising event for the Parkinson’s community.”  The event, which brings together thousands of people touched by Parkinson’s, takes place every spring in New York City’s Central Park.  PatientsLikeMe members from all over the U.S. will once again be meeting in New York to walk together as a team.  (Check out some of our onsite interviews with PatientsLikeMe members from the 2008 Unity Walk and keep an eye out  for 2009 highlights).

Stay tuned for more from us as the month unfolds. Until then, what else is happening this year for PD Awareness Month? Share your events or PD news in the comments below!