9 posts from April, 2013

“I choose hope.” An interview with multiple sclerosis blogger Tricia

Posted April 29th, 2013 by

In our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Tricia who’s writing about her journey with multiple sclerosis (MS) on her blog Love My MS Life. Some of you may know her on PatientsLikeMe as jakesmama. Check out her full interview below where she talks about the impact of connecting with others and why it took 11 years to get a diagnosis.

Tricia

Why did you start blogging about your journey with MS and how has the community reacted?
I started blogging about my journey with MS last year. I’ve had MS for over 20 years and have been an avid fundraiser, MS Champion and MS Advocate ever since. My goal was/is to share my experiences with others living with MS to hopefully inspire and encourage them, while “telling it like it is.”

The reaction has been wonderful! When I hear people tell me they relate to my experiences because they “get it,” it makes me feel like I’m doing something good for others that share this disease.

 

In one of your posts, you mention that your first symptom started 11 years before you were officially diagnosed. Can you tell us about that?
When I was 13 years old, I had the virus mononucleosis. One afternoon the vision in my left eye became blurry but I disregarded it. The next morning I woke up and the vision was basically gone in my left eye. I was dizzy, nauseous and was taken to the hospital. The doctors called my bout of optic neuritis a “fluke thing” and I went home. During my high school years I would have bouts of optic neuritis in my good eye and would be given oral prednisone to bring the swelling of the optic nerve down. It wasn’t until my son Jake was nine months old that my ophthalmologist sent me for an MRI. This was 11 years later and when I was diagnosed with MS.

 

What’s it been like to connect to others with MS on PatientsLikeMe?
A friend of mine told me about PatientsLikeMe years ago. It’s a great way to connect with others living with MS, to compare symptoms and offer suggestions. I use it as a helpful tool to track my disease progression, keep notes, and learn from others.

 

What’s one bit of knowledge no MS patient should be without?
One of my favorite quotes is, “Never, never, never give up,” by Winston Churchill. I believe all patients living with MS struggle daily whether we can see it or not. I choose to have HOPE for my future and HOPE for a cure!

 

If you’re living with MS, find others just like you in our growing community of more than 34,700 MS 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 forum.


The ‘something’ that helps you forget

Posted April 24th, 2013 by

If you’re living with a life changing condition, it’s sometimes hard to take your mind off it. We become consumed by medications, side effects, symptoms and everyday living. But every once in a while, we find something that can take our minds somewhere else. And for a time, no matter how brief, all those worries just drift away. For your fellow PatientsLikeMe community member Parkinson Pete, that ‘something’ is music.

“I have been absorbed in my music project…I realized being that absorbed I really, for the first time in years, forgot that I have PD.” -Parkinson Pete

 

Parkinson Pete was diagnosed with Parkinson’s Disease (PD) back in July of 2008 and he joined PatientsLikeMe shortly after. Just this past February, he started a forum thread (I have found a way to reduce PD- do something else) talking about his new music project and posting some of his great recordings for all to hear.

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What happened next was quite simply…awesome. Parkinson Pete was playing every instrument in his recordings except the drums. So fellow community member Shawden offered up his skills as a drummer. And the duo was formed!

Probably the coolest part of it all is that one lives in Washington, the other in California. Parkinson Pete records the guitar and vocals, and then sends it over to Shawden to add in the drums. Their songs are posted up on YouTube and they share them in the PD Forum. Don’t forget to check out the duo’s latest hits. Two talented people discovered and share their love for music on PatientsLikeMe, and aren’t letting PD get in the way. Can’t wait for their next post.


Keith & Sarah’s personal journey with rare lung disease. Part I, “Fine”

Posted April 18th, 2013 by

As part of our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Sarah and Keith. Sarah started writing about her fiancé Keith’s journey with a rare lung disease back in July of 2012 on her blog Taking a Deep Breath. In this first part of our three-part series, Keith and Sarah talk about why they started blogging, and the difficulties of finding the right diagnosis.

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What prompted you to start blogging about Keith’s journey and what’s the reaction been? 

[Sarah] When Keith’s health took a turn for the worse in the winter of 2011, I asked him repeatedly if he would allow me to share his story, knowing that we were likely going down a very difficult road, and selfishly wanting lots of support while we (I) went down that road. He wasn’t comfortable sharing until the day we drove away from his respirologist’s office, after an appointment where the doctor said that Keith was “fine,” wasn’t a candidate for transplant, and didn’t need to be on oxygen. We knew different. I blogged, we got a second opinion, and Keith was on oxygen within 4 days, and referred to the transplant program at Toronto General Hospital (TGH) within 2 weeks.

At what point did you know that something was not right? What was your first symptom?
[Keith] I got a cold that wouldn’t go away, and it turned into a pneumonia. I was hospitalized in the fall/winter of 1997. I never fully recovered.

What was involved in finding a diagnosis? Did Keith ever receive an official diagnosis?
[Sarah] Keith visited various specialists and respirologists and was misdiagnosed with various diseases (BOOP {bronchiolitis obliterans organizing pneumonia}, COPD, asthma) before the final diagnosis of diffuse panbronchiolitis (DPB) was given. It was a strange diagnosis since the disease strikes people of Asian descent, and Keith is Caucasian. DNA testing was done to see if there was Asian blood in his makeup, but there was not. Interestingly enough, in the final pathology of Keith’s old lungs after removal – this diagnosis was confirmed.

What advice do you both have for patients that are struggling to find a diagnosis? 
[Sarah & Keith] Ask as many people as you can who have experience with lung disease, or know someone who has it. Find out doctors’ names, get referrals and stick to your guns. If you don’t feel right, tell someone!


Irritable Bowel Syndrome Awareness Month

Posted April 15th, 2013 by

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.

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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.

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.



[1] http://www.aboutibs.org/site/about-ibs/april-ibs-awareness-month


Young professionals, students and patients gather to collaborate at 5th Parkinson’s Disease Summer School

Posted April 9th, 2013 by

The Parkinson’s Disease Summer School was founded in 2008 by Paul de Roos of the European Medical Students’ Association and Krzysztof Nesterowicz of the European Pharmacy Students’ Association. This year, the school is leaving its European roots and relocating to Montreal, Canada.

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Thirty participants from around the world will work in small teams to develop “relevant and realistic research project proposals.” While the chosen participants come from a variety of professional backgrounds, they all share a common interest in advancing Parkinson’s disease (PD) research. The ultimate goal is to get participants thinking outside the box to create future projects that can “make an impact on the lives of PD patients.”

Just like PatientsLikeMe, the summer school knows that to advance research we have to connect with people who aren’t just studying disease, but living with it. Sara Riggare, a PhD student in Sweden with early onset PD, and Jill Ames-Carson, a physiotherapist from Canada living with PD, will both be at the summer school. Their participation and contribution will help lift patient centered thinking about PD to the next level.

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“This year we celebrate the 5th edition of the summer school. We are pushing the boundaries by intensifying our engagement with Parkinson’s patients in our learning and evaluation process.” –Paul de Roos, MD

Some of the experts that will be guiding the participants through their work were selected by the Movement Disorder Society. The summer school is also teaming up with The World Parkinson’s Congress so that participants can showcase their research ideas directly to Parkinson’s professionals.

If you’re living with Parkinson’s disease, find others just like you in the growing community of almost 7,000 Parkinson’s 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 Parkinson’s disease forum.


Raising awareness to lower stress

Posted April 8th, 2013 by

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?

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To start, measure your stress level now. The Mayo Clinic has a great assessment tool to rate your stress level and understand the affect stress is having in your life. Then see what works for you. There are lots of resources with good information on stress management and relief. Your PatientsLikeMe communities are talking about their stressors in the forums. See what causes stress for others like you, and what they do to relieve it. Cheers, to a stress-free April everyone!

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Psoriasis in winter: what we’ve learned

Posted April 5th, 2013 by

The winter months can mean dry air, less sunlight, indoor heating, and heavy clothing – not the best conditions for people living with psoriasis. As part of our continuing seasonal series, we conducted a
survey of our psoriasis community between October and March, receiving responses from over 500 patients.

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We asked everything from, “How does the way you dress for winter affect your psoriasis?” to “Does getting the sniffles or the flue impact your condition?” Members in more than 15 countries responded, signaling our survey is really starting to go global!

The average age of those who responded was 45, with 70% women and 30% men. In response to whether or not getting sick had an effect on their psoriasis, most people (40%) said that it had an effect, 33% said it affected their psoriasis “a little”, while 27% said it had no effect.

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To share what we learned, we’ve put together a new Patient Voice report entitled Uncovering Psoriasis. Don’t miss this in-depth look at how our psoriasis patients rated their “skinpact” this fall along with what specific factors can increase it, from age to the location of an outbreak to the percentage of the body covered with itchy, red plaques (a measurement known as the Body Surface Area or BSA score).

Interested in other seasonal psoriasis insights?  Find tips about living with psoriasis during the summertime in our previous report.

Want to connect and learn from psoriasis patients like you?

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With you every step of the way- PatientsLikeMeInMotion

Posted April 3rd, 2013 by

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 PatientsLikeMeInMotionTM.

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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


Raising Awareness for Parkinson’s Disease

Posted April 1st, 2013 by

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.

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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.

If you’re living with Parkinson’s disease, find others just like you in the growing community of almost 7,000 Parkinson’s 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 Parkinson’s disease forum.


[1] http://www.parkinson.org/parkinson-s-disease.aspx