Did you know that between 9%-23% of people around the world suffer from irritable bowel syndrome (IBS)? However, many remain undiagnosed and just aren’t aware “that their symptoms indicate a medically recognized disorder.”[1] April is IBS Awareness Month and the International Foundation for Functional Gastrointestinal Disorders (IFFGD) is working to get information out to the public and advance research.

There are some easy things you can do to get involved in your community or even right from your home. Here are just a few of the ways you can help the IFFGD get the message out and help raise awareness.

• Share their press release on veterans with IBS
• Use their ready-made template to write a letter to the editor
• Tell your legislator why this is important
• Share the IBS awareness posters with your communities and social networks
• Become part of the Digestive Health Alliance

If you’re living with IBS, find others just like you in our growing community of almost 3,000 IBS patients on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forums.

April is National Stress Awareness Month. According to the Mayo Clinic, our bodies release a burst of hormones when they perceive the threat of stress. It’s sometimes referred to as the “fight-or-flight” response.[1] It’s not a bad thing, but too much stress on a constant basis can negatively impact our health, relationships and overall quality of life. So what can we do about it?

Many of you are helping to raise awareness about your conditions. You’re not only encouraging support and donations, you’re spreading knowledge and eliminating stigmas. We want to help support your disease awareness efforts too, with PatientsLikeMeInMotion^TM.

Over the years, we’ve sponsored hundreds of fundraising teams through our PatientsLikeMeInMotion program. Let us sponsor your team next as you walk or run with your local nonprofit organization to raise awareness for your disease. Your whole team will get free t-shirts to wear, a monetary donation and more!

“There is still no cure, but at least now, thanks to these fundraising events, there are advancements in patient care, and there is hope. We’re grateful to PatientsLikeMe for their continued support for events that raise awareness and funds for MS research.” – PatientsLikeMe member Judy

Learn more about PatientsLikeMeInMotion and check out a few of the many awareness teams we’ve sponsored.

The Walking Warriors

The Jingle Bell Run/Walk

Judy and Jim

Did you know that four to six million people have Parkinson’s disease (PD) worldwide? And that 50,000-60,000 new cases of PD are diagnosed each year in the US?[1] April is Parkinson’s Awareness Month and there are more ways than ever for you to “Join the Fight” against this neurodegenerative brain disorder.

The Parkinson’s Disease Foundation has created an awesome toolkit called “30 Ways to Raise Awareness of Parkinson’s.” You’ll discover ways to reach out to your local media, find tips and tricks for fundraising, and learn how to get your public official to join in the fight. You can download the toolkit for free and start spreading the word today.

We’ve sponsored hundreds of fundraising teams through our PatientsLikeMeInMotion program, but we’re pretty sure this team wins the blue ribbon for most festive.

Please meet PatientsLikeMe member Kennqueen’s very colorful team, who donned their best tutus and striped socks for the Jingle Bell Run/Walk for Arthritis in Richland, Washington, on November 17, 2012.  Kennqueen has been living with rheumatoid arthritis (RA) for more than a decade, and her supportive family and friends came out to raise spirits and jingle in her honor while raising money for the Arthritis Foundation.

This particular Jingle Bell Run/Walk in Richland, Washington, part of the Tri-Cities area, raised more than $20,000 for arthritis research, while all Jingle Bell events across the country have raised more than seven million dollars to date!  How’s that for some holiday cheer?

Inspired to get into the fundraising spirit in 2013?  Learn how the PatientsLikeMeInMotion program can help with t-shirts and a monetary donation for your team.

Until then, Happy Holidays from PatientsLikeMe!

Welcome to the latest installment of our “Spotlighted Blogger” series.  Earlier this year, we focused on psoriasis bloggers, including Lissa, Alisha B., Jessica and Joni, and today we’re pleased to add a male perspective to the mix.  PatientsLikeMe member Simon’s witty blog, entitled My Skin and I, discusses his decade-long battle with psoriasis, a chronic autoimmune condition that can cause itching, rashes and plaques.  What has he learned along the way?  Find out that and more in our interview.

1.     Why did you start blogging about psoriasis, and what’s the reaction been?

I started blogging as a way to vent my feelings. I don’t really talk about my feelings, even to my family, and found it very hard to explain what was going on in my head and in my life.

When I spoke to people about psoriasis, I kept a lot back and, to write it, even if I hadn’t published it, was a release. I decided to make it public partly as I needed my family to understand what I had been going through and also to help raise awareness.

The reaction has been positive.  I have been told I made a few people cry and even had other friends suddenly announce they also have the condition. This showed me that I wasn’t alone and that there are many people that feel the same way and hide their emotions. I am quite pleased that I haven’t had much in the way of sympathy as that’s not why I started the blog.  The worst thing is people saying, “you poor thing.”

2.     You write about your “war with psoriasis.” Are you winning these days?

Ask me this question on different days and I might answer it differently each time. I would say generally yes, although I have lost a few skirmishes lately. The last couple of months have been extremely stressful due to personal and work issues, which hasn’t helped, and psoriasis clings on to moments like that. Also, with the cold weather in the UK at the moment, especially with the sudden freezing weather, my skin is quite sore and dry despite using my creams.

My skin is still at a manageable state, though, and even though it has got a little worse over the last week, it’s nothing I can’t handle. I just have the slight wobble, then think of Christmas coming, and there has been plenty going on lately to keep my mind occupied. The dark space that psoriasis occupies in my head is quite small at the moment.

3.     You recently joined PatientsLikeMe. What’s your impression thus far?

My first impression is good. I haven’t been that active on the site but then I haven’t done much on the blog either recently, or on my food blog that I also write, purely because I’ve been so busy. The people I have come into contact with through the site have all been positive and friendly, which is great. There is a time when the purely psoriasis groups/sites get a bit depressive, and I find myself backing away.

Psoriasis does seem to bring a lot of anger with it, and I quite understand that.  I just wish my fellow sufferers were a bit friendlier to each other now and then. And there are some who are brilliant; in fact, you have interviewed a few already. It is quite sobering to read what others go through, and this helps me get some perspective on my own condition.

4.     What advice would you give someone who’s newly diagnosed with psoriasis?

I would say make sure you see your doctor (GP here in the UK) and ask for a referral if you think your skin is bad enough. Find one of the many supports sites, like this one, which can measure your severity. But if the doctor can’t seem to help you, ask to be referred no matter how bad your skin is. Also persevere with the medication, as your skin is very unique to you and, just because one treatment works for one person, doesn’t mean it will work for you. Give them time to work and, if there’s no response, try something else.

The other thing is to talk.  It doesn’t have to be to your family or anyone close. The most important person is your doctor – don’t just show them your skin, tell them exactly how it makes you feel. If you can’t tell anyone, then write it down. There are many support networks out there with people who have the same condition and who will understand what you are going through. One last thing:  do not give up the fight.

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Want to hear how other psoriasis patients are dealing with dry air, cooler temps and other seasonal changes?  Check out our recent Patient Voice report on coping with psoriasis in the fall.  Also, find all of our blog coverage of psoriasis here.

“There is still no cure, but at least now, thanks to these fundraising events, there are advancements in patient care, and there is hope.”
- Multiple sclerosis (MS) patient Judy

It may be winter now, but plans for next year’s disease-related fundraising events are underway.  The question is:  will you be taking part?

For inspiration, see Judy and Jim below in their bright blue PatientsLikeMeMe t-shirts before the start of Walk MS in Cranford, NJ, on April 15, 2012.  “When I was first diagnosed over 20 years ago, there were no therapies for MS patients and knowledge was limited,” says Judy.  “We’re grateful to PatientsLikeMe for their continued support for events that raise awareness and funds for MS research.”  She adds that the Cranford Walk MS event had “a large and enthusiastic turnout.”

Congrats to Judy and all of our PatientsLikeMeInMotion-sponsored teams for your efforts. For more PatientsLikeMeInMotion team photos, check out our growing Flickr collection. Thinking about organizing a team for next spring? Learn how the PatientsLikeMeInMotion program can help with t-shirts and a monetary donation.

Earlier this month, we shared a video interview with PatientsLikeMe member Wayne Sticha, who founded the Ride for Dads in 2010 to raise awareness of prostate cancer.

Since September is National Prostate Cancer Awareness Month, we wanted to close out the month by sharing one of Wayne’s photos from 2012 Ride for Dads, which involved approximately 70 motorcycles, made five stops throughout Minnesota and generated $1,100 for the Prostate Cancer Foundation this summer.  PatientsLikeMe was proud to support this community event with a monetary donation and bright blue PatientsLikeMe t-shirts as part of our PatientsLikeMeInMotion program.

Congrats to Wayne and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your condition. For more PatientsLikeMeInMotion team photos, check out our growing Flickr collection.

Thinking about organizing a team – or even founding an event like Wayne did?  Learn more about the PatientsLikeMeInMotion program today.

Are you in recovery from an addiction or mental health disorder – or do you know someone who is?  The theme for National Recovery Month 2012, sponsored by the Substance Abuse and Mental Health Services Administration (SAMHSA), is “Join the Voices for Recovery: It’s Worth It!”

There are several different ways to participate in this annual event, which promotes the societal benefits of prevention and treatment for mental and substance use disorders:

• You can find or sponsor a community event
• Add an awareness widget to your website
• Enter pictures in the Flickr challenge
• Order a customizable PSA for local TV

Now in its 23rd year, National Recovery Month was founded on the belief that we should celebrate the gains made by those in recovery, just as we would with those who are managing other health conditions.  The goal is to spread the positive message you can live a healthy and rewarding life with the aid of treatment and mental health services.

Are you looking to start on the road to recovery?  Reclaim your life by calling SAMHSA’s National Helpline (1-800-662-HELP), where you can be assisted in both English and Spanish.  If you’re already in recovery, find solidarity and support by connecting with others like you at PatientsLikeMe.  We have thousands of patients sharing their experiences with numerous disorders, including:

• Alcohol addiction
• Bipolar disorder
• Drug addiction
• Generalized anxiety disorder (GAD)
• Major depressive disorder
• Phobic disorder
• Post traumatic stress disorder (PTSD)

Exchange stories and tips – as well as in-depth treatment evaluations – with those who can truly relate today.

“I wanted to share my story to, frankly, save other men’s lives.  I discovered that very few knew anything about [prostate cancer].  Even less had had the PSA test.”

– Wayne Sticha, 64, Founder of Ride for Dads

Over the summer, we shared two interviews with PatientLikeMe members conducted by our partner Patient Power:  one with psoriasis patient Lissa and another with multiple sclerosis patient Marcia.  Today, against the backdrop of National Prostate Cancer Awareness Month, we’re pleased to present the latest Patient Power video interview with member Wayne Sticha, a prostate cancer survivor from Lindstrom, Minnesota.

Check out Wayne’s interview to learn about his prostate cancer experience as well as how he was inspired to found Ride for Dads, an annual benefit and awareness motorcycle ride now in its third year.  What drives his passion for educating other men, who he says “tend to ignore the subtle signs of aging,” about prostate cancer?  And what are his aspirations for this growing event?  Hit “play” below to find out.

Wayne Sticha: Prostate Cancer Survivor Turned Advocate from Patient Power® on Vimeo.

Stay tuned for a post featuring one of Wayne’s photos from the 2012 Ride for Dads as well as the next installment of the Patient Power interview series.

The heat isn’t letting up this summer – but that isn’t stopping our members from participating in disease-related walk/run events in their local communities.

For inspiration, please meet some of the members of Parkinson’s disease patient daddytom’s team, who joined together to raise money and show solidarity at a Shake, Rattle and Roll Run sponsored by the American Parkinson Disease Association in Texas.  From left to right are Connie, Paula, Dorothy and Larry (the latter wearing blue PatientsLikeMeInMotion t-shirts) as they triumphantly cross the finish line.

Congrats to daddytom 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 growing Flickr collection.

Thinking about organizing a team for this fall?  Learn more about the PatientsLikeMeInMotion program today.

As we get deeper into summer, there are disease-related walk/run events happening almost every weekend.  What they all share is an opportunity for patients, friends and family to come together in solidarity and raise money for research and patient services.

For inspiration, please meet multiple sclerosis (MS) patient barneyhouse and her “Walking Warriors,” who took part in a recent Walk MS event in Ormond Springs, Florida.  By signing up for our PatientsLikeMeInMotion program, the team was able to score bright blue PatientsLikeMe t-shirts and a monetary donation towards their fundraising goal. “My sister, who is six years older, has had MS for over 30 years,” writes barneyhouse.  “So although this is new for me, it is not new to me.”

Congrats to the Walking Warriors team as well as all of our PatientsLikeMeInMotion-sponsored groups for your efforts to raise funds and awareness for your condition. We’re honored to support you in your journey.  For more PatientsLikeMeInMotion team photos, check out our growing Flickr collection.

Thinking about organizing a team for this summer or fall?  Learn more about the PatientsLikeMeInMotion program today.

Summer is here, and that means there are disease-related walk/run events happening all around the country!

For inspiration, please meet epilepsy patient Monica (second from right), who led a PatientsLikeMeInMotion-sponsored team at the National Walk for Epilepsy in Washington, DC.  Held on March 31, 2012, the two-mile walk occurred between Madison and Jefferson Drives on DC’s famous National Mall.  “I do a lot of fundraising on my Facebook page, so my friends and family all know I have epilepsy,” says Monica.

Congrats to Monica 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 growing Flickr collection.

Thinking about organizing a team for this summer or fall?  Learn more about the PatientsLikeMeInMotion program today.

Parkinson’s Awareness Month isn’t over yet!  This month-long effort is capped off by the Parkinson’s Unity Walk, which takes place Saturday, April 28th, in New York City’s Central Park.

The largest grassroots awareness event for Parkinson’s disease (PD), the Unity Walk is anticipated to attract more than 10,000 participants.  If you’ve never attended something of that size, it’s quite a lot of people.  Beyond the sheer scope of the event, there’s another noteworthy fact:  100% of all donations go towards research supported by the seven major US Parkinson’s foundations.*  In 2011, that came to more than $1.5 million!

Now in its 18th year, the Unity Walk is an opportunity for solidarity amongst the different PD organizations.  Admirably, these groups have shown there’s no need to compete for funds when you can come together as one.  “This event truly unifies the whole Parkinson’s community behind a common mission—supporting the best, cutting-edge research,” says Joyce Oberdorf, President and CEO of the National Parkinson Foundation.  “It is like no other.”

What’s new for 2012?  First, there’s a new 1.4 mile walk route in Central Park – slightly longer than 2011 but shorter than in previous years.  (It is wheelchair accessible.)  There will be free coffee served this year, and there will also be four food trucks on hand.  Another fun feature is the Team Photo Booth.  Get a printed copy of your photo right away and then download a digital copy later from the vendor website.  Learn about other new aspects here.

Over the years, PatientsLikeMe has sponsored a number of Unity Walk teams through our PatientsLikeMeInMotion program, which provides bright blue T-shirts, a monetary donation and more.  We’ve also attended the Unity Walk and interviewed some of the PatientsLikeMe members present.  Check out the short one-minute video below featuring four members of Team PatientsLikeMe at the 2010 Unity Walk.  (Find other Unity Walk interviews on our YouTube channel.)

*All Unity Walk donations are split evenly among these seven US organizations:  American Parkinson Disease Association, The Michael J. Fox Foundation for Parkinson’s Research, National Parkinson Foundation, Parkinson’s Action Network, The Parkinson Alliance, Parkinson’s Disease Foundation and The Parkinson’s Institute and Clinical Center.