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.

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!

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.

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.

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.

“This year we celebrate the 5^th 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.

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?

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.

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.

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?

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.

Of all the psoriasis patients we’ve interviewed, Erica was hit by this highly stigmatized autoimmune condition the earliest – she developed visible symptoms at the tender age of 9.  Now 21, she shares her decade-plus journey from being the girl that people avoided in school to an increasingly confident young woman who has finally started meeting others like her, people who are also living with the daily challenges of psoriasis.  What difference has that made for her?  And how has she started to take control of her treatment course as of late?  Find out that and much more in this inspiring interview.

1. Tell us how you were treated by classmates and school nurses growing up.  

The first few years were the hardest, trying to understand the disease and how it affected me. It was hard to explain to others, since they didn’t really want to listen. Most of my classmates avoided me because they were afraid they would catch it, no matter how many times I would explain it they never believed me. I was sent to the nurse a lot because I’d scratch my head or my arms till they bled. The nurses never wanted to deal with it so they sent me home. Now that I’m older and can explain it better, I don’t have as many problems. If someone stares at my skin, I simply tell them it’s psoriasis and it’s not contagious. But the hardest thing I had to go through was people avoiding physical contact with me.

2. How important is it to find the right dermatologist? You’ve said yours is like a second mother.

I’ve known Dr. Clifton since I was 13 years old, and I’m 21 now. It’s very important to have that great relationship with your doctor. They need to know every single little detail of your life when you have a serious disease such as psoriasis, as so many things can cause it to get worse or better and can react with the medications. You need to know that they will listen to you and take the time you need. You also need to trust them with your life. The last time I saw Dr. Clifton after three years, I had changed, however, and I didn’t agree with the treatment course she wanted to do. I respect her advice but I don’t agree with her [at this point], so therefore I’ve decided I want to find a different dermatologist.

3. What’s helped you develop the confidence and love of life you have now?

I still have days where I feel depressed but I’m lucky enough to be surrounded by amazing supportive people in my life. God is the main reason I overcame the depression. I pray a lot! I also read my Bible, listen to Christian music (Skillet is my favorite band!), talk to someone and change my way of thinking. When I feel sad or upset I’ll look up Skillet on the laptop and just play it as loud as I can and just breathe. I always feel better after that. I go to an amazing church that has some awesome people in it. I know I can call or text any of them any time and they will be there for me. If I’m focusing on the bad, I try to look at the bright side of things and that seems to help as well. But praying is by far the thing that makes me feel best and at peace.

4. What’s it been like to connect with other psoriasis patients at PatientsLikeMe? 

Growing up with psoriasis, and having no one else around with it, was extremely hard. I had no one to connect with. But since being on the site, I’ve made some great connections and have made some lifelong friends. The strange thing is how much we have in common and how many of the same things we’ve been through. What’s awesome is being able to tell someone what’s going on with my skin and they really understand because they’ve been through the same thing. In the past nine months, I’ve also met a lot of people in person with psoriasis and I’m always telling them about this site!

Today, March 26, 2013, is American Diabetes Association Alert Day, so we are doing our part at PatientsLikeMe by putting out our own alert.  Are you at risk for type 2 diabetes?  Take the American Diabetes Association’s Diabetes Risk Test right now to find out now.

One in three adult Americans is estimated to have prediabetes – marked by high blood sugar levels – so don’t think it couldn’t happen to you.  Fortunately, lifestyle changes such as weight loss and increased physical activity can delay the onset of type 2 diabetes, or even prevent it altogether.

Not only will you find out your risk level by taking this free and fast test, but you’ll help raise money to fight the growing diabetes epidemic (26 million children and adults in the US).  Boar’s Head is donating $5 to the ADA for every person who takes the test between March 26th and April 9th – up to $50,000.

So take a moment and answer a few simple questions about your weight, age, family history and other potential risk factors.  You’ll be helping yourself potentially avoid a serious disease, and you’ll be helping others no matter what.  Take the test now.

And more specifically, can it be used to collect patient data, raise investment funds, make scientific data more accurate and even allow regular people to access the world of venture capital?

This was the provocative question posed to a five-person discussion panel at the 2012 Partnering for Cures conference last fall that included several thought leaders, including PatientsLikeMe’s own Sally Okun, RN, MMHS, who was recently promoted to the position of Vice President of Advocacy, Policy and Patient Safety.

“We have a small subset of people on PatientsLikeMe who have found us and who are gaining some expertise at being what might be called citizen scientists,” says Sally.  “But I think the important piece is that there are so many more people out there that we have to reach and help understand that there is access to so much more information than you are currently getting.  And social media is one way of doing that.”

Tune in below for Sally’s full comments and to hear what the other four panelists had to say about the growing use of social media in science.

This week, PatientsLikeMe announced two new appointments to the team: Kim Goodwin and Sally Okun RN. Here Sally, who was promoted to Vice President of Advocacy, Policy and Patient Safety, explains how she’ll continue to make sure the patient voice is heard, collected and disseminated to affect better treatment, services and care. Look for more of Sally in April, when she’ll be the first nurse to grace the stage at 2013 TEDMED in Washington, D.C.

What exactly is patient advocacy?
I like to think of it as actions by individuals, groups or organizations to support the interests and needs of patients across the healthcare system. Patient advocates can be family members or friends, professionals like nurses or social workers or non-professionals, including health coaches and navigators. They can also be nonprofit groups and grassroots activists. For me, patient advocacy is part of my being. It has grown out of my experiences as a nurse and as a family caregiver.

Creating the advocacy role at PatientsLikeMe is a formal step that highlights something we’ve done for years: amplify the voice of our patient members, especially among external groups such as health systems, government agencies and policymakers. We want to continue to drive industry and government to make more patient-centric decisions. It’s never been more important.   

What is your safety focus and how will it impact members?
Our safety focus to date has largely been on side effects experienced by patients when using drugs and medical products. These data are an important contribution to the understanding of how medications work in the real world, outside of the controlled environment of clinical trials.

We’re exploring how best to collect meaningful safety information that matters most to you and other patients, including information about medical devices and equipment, infections, falls in care facilities, and complications that may result from overtreatment. Sharing this information with our members and industry at large can support better decision-making and better outcomes.

Why is your role important to patients?
I have the unique opportunity to bring attention to a variety of topics and issues that our members are concerned about. For example, there have been many changes to the healthcare system as a result of the Affordable Care Act. Prominent among these is the concept called “patient-centered care,” which is being infused into all aspects of care, research and policy development.

My new role gives me access to meetings, discussions and conferences being held around the country and all over the world, focused on the nuts and bolts of putting patient-centered care into action. It is vital to have groups such as PatientsLikeMe present at these meetings. Our real-world perspective is essential if we are to move beyond buzzwords to programs and policies that really matter to you, our patients.

What don’t policymakers know about patients?
Probably the most frequently asked questions by policymakers, clinicians and researchers alike are related to patient engagement and patient activation, considered by many to be “the blockbuster drug of the century.” (see this Health Affairs  piece)  There’s evidence from research studies and demonstration projects that patients who are more engaged in their care and more activated to participate in their care have better outcomes – this can translate into better health for the patient at less cost.

This isn’t news to PatientsLikeMe or you, our members! In fact, our members, who tend to be more engaged and active in their own care, have reported benefits that include improved communication with their doctors, less hospitalizations, improved adherence to medications and better understanding of their condition. Now, that’s real evidence of the power of patients engaging with each other.

How can members be involved in what you do?
Over the past couple of months, I have had the opportunity to reach out to members through our Community Team on a couple of advocacy and policy projects. For example, we recently collaborated with one of our members with MS (LadyMac) for this conference. In the future, I hope to have a place on the website that allows for direct dialogue about current and future activities related to advocacy, policy and safety. It will also be a place where I will circle back with information after attending events, conferences and meetings.

This week PatientsLikeMe announced two new appointments to the team: Kim Goodwin and Sally Okun. Here Kim, one of the world’s leading user experience (UX) experts, shares her thoughts about why she’s joined the company, and what she hopes to accomplish on the website for members. You’ll hear from Sally too, later this week.

What will the new user experience team do?
Our job is to make everything about the PatientsLikeMe experience more usable, useful, and compelling. We figure out what our members need, then sketch some ideas of what to build. We work with other PatientsLikeMe teams and our members and other patients to make sure we’ve got it right. When we all think it’s in good shape, we turn it into a design blueprint for our engineers.

Right now we’re designing some essential renovations, like cleaning up screen clutter, fixing search, and making it easier to find your way around. After that, we’ll be looking at ways to make data entry easier and smarter, designing for mobile devices, and eventually adding more content and functionality.

Why are you here at PatientsLikeMe?
Of all the products I’ve designed in the last 20 years, the ones related to health have always been my favorites. Making a great phone or a slick commercial website can be fun, but nothing is as inspiring as helping people live longer, healthier, or better lives.

PatientsLikeMe is even better than other healthcare work I’ve done, though. The whole company is driven by patient-centered values in a way I haven’t seen anywhere else. My job is to make sure those values are evident in what we deliver to our members.

How have you improved other products?
As a consultant, I once worked with a big online pharmacy that made people go through a bunch of unnecessary steps to fill a prescription. They saw an immediate drop in help desk emails after my team eliminated those steps and got rid of some jargon.

Whether it’s a glucose meter for Abbott or a website for Lexus, I’ve found the same approach works very well. Get the whole team focused on what users want to accomplish, how they think and feel about what they’re trying to do, and the language they naturally use, and it’s easier to come up with the right solutions.

What will you help PatientsLikeMe do differently?
PatientsLikeMe has always listened to members; the community team in particular makes sure the whole team is hearing member suggestions and concerns. The user experience team will be involving patients and caregivers even more closely in how we build products. We’ll also be talking to people who aren’t members yet, and to members we don’t hear from as much because they don’t hang out in the forums.

Before we design something new, we’ve started doing in-depth interviews with members and other patients, sometimes even in their homes. We’re not just looking at how people use our site. We’re trying to understand what it’s like to get diagnosed and live with different conditions, so we can help address the most important questions and challenges. We’ll keep doing more of that as we add new communities to the site.

We’ll be asking small groups of members to try things out and give us feedback before we launch any major changes. We’ll be testing designs with some non-members, too, because some updates will focus on making the site easier to learn when you first sign up. This should mean things go more smoothly when we roll out a site update. Of course, the community team will still be listening for any issues we don’t catch, and our engineers will be on duty to fix any bugs.

What do you hope to accomplish for members?
Of course I want to make some aspects of the site easier to use, but we’ll do much more than that. We’re thinking about how we can answer questions like what helps people sleep better, or how long they’re able to work with this condition, or how does stress affect certain symptoms.

We want to do a lot on the social aspects of the site, too. One thing we’ve heard consistently in patient interviews is that a “patient like me” isn’t just someone who shares my condition. It’s someone who also shares my life experiences and interests, like trying to stay employed or be a good parent when you have no stamina, or trying to find natural treatments that work.

How can members get involved?
We’ll soon start inviting a few members to help us test some ideas for simplifying the site navigation. Later on, we’ll have more invitations like that. We’ll be asking people to participate in interviews now and then. In the coming months, we’ll also be looking for a few members to get involved in a bigger way.

CAMBRIDGE, Mass.— March 19, 2013—PatientsLikeMe appoints Kim Goodwin and Sally Okun RN to two newly-created positions that will keep patient needs upfront as the company continues to enhance its website and drive industry and government to make more patient-centric decisions. Kim Goodwin has been named Vice President (VP) of User Experience (UX) and Sally Okun has been promoted to VP of Advocacy, Policy and Patient Safety.

PatientsLikeMe Co-founder and President Ben Heywood says the appointments underscore the company’s “patients first” mission. “We’ve been committed to understanding and representing patient interests for years. With Kim and Sally in these roles, we’ll be in an even better position to keep patients at the forefront of all we do – from how we develop our website to how we represent patient interests at an industry and policy level.”

Kim Goodwin
In her role as VP of UX, Kim will evolve the information and structure on www.patientslikeme.com to help people live better lives with their conditions. She plans to expand member involvement in the website development process to improve usability and to make sure the website’s content answers their most important questions. She will also make it easier for members to find and connect with people who share not just the same condition, but the same values and experiences. Additionally, Kim and her new team will improve how researchers and providers conduct research and interact with members on the site.

Kim’s expertise in design has made her one of the most distinguished UX experts in the world. She is a frequent speaker and the author of the 2009 bestseller Designing for the Digital Age, which is heralded as the most comprehensive how-to guide in the field. Before joining PatientsLikeMe she was VP of Design and General Manager at California-based design firm Cooper. Over the years, Kim has also worked with clients including Lexus, Cardinal Health, Abbott, Medtronic Diabetes, Boeing, Cisco, and Best Buy. Her healthcare experience includes work for companies delivering diagnostic and treatment devices, consumer health education and tracking, and desktop and tablet-based electronic medical records.

Sally Okun
As VP of Advocacy, Policy and Patient Safety, Sally plays a vital role in ensuring the patient voice is heard, collected and disseminated to affect better treatment, services and care. As the company’s liaison with government and regulatory agencies, she will bring the patient voice to worldwide healthcare discussions and educate policy makers on the benefits of sharing health data. Previously, she developed the company’s drug safety and pharmacovigilance platform, which monitors patient data for potential adverse events. In this new role, Sally will continue to expand the website’s drug safety content and ensure the data collected about treatments and their impact become more transparent to the community at large.

Recently named a 2013 TEDMED speaker, Sally joined PatientsLikeMe in 2008 and led the team responsible for the website’s medical ontology and curation of patient-reported health data. She has since been a frequent speaker at policy workshops and forums and has contributed to peer reviewed publications and discussion papers for the Institute of Medicine (IOM) and others. She also co-authored a chapter for Health Informatics: An Interprofessional Approach, an upcoming Elsevier textbook. A registered nurse for over three decades, Sally’s clinical practice specialized in palliative and end-of-life care. In that time she also participated in numerous clinical, research, and educational initiatives of national significance.

About PatientsLikeMe
PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 30 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us on our blog, on Twitter or via Facebook.

Did you know that 1.7 million Americans sustain a traumatic brain injury each year?  Or that the term includes any type of blow, bump or jolt to the head or penetrating head injury that disrupts normal brain function?

March is Brain Injury Awareness Month, a time for reinforcing the seriousness of head injuries, given that traumatic brain injuries are a contributing factor in a third of all injury-related deaths in the US.  In addition, 3.1 million individuals are living with life-long disability as a result of a traumatic brain injury. Some common causes of these injuries are falls, car accidents, workplace accidents and assaults, but the effects can vary greatly from person to person.  No two brain injuries are alike.

Are you living with a traumatic brain injury?  Share your symptom and treatment histories with the 500+ members of PatientsLikeMe’s traumatic brain injury community and discuss your experiences in our Injuries and Traumas Forum.  In addition, consider raising awareness in your area by getting involved with the Brain Injury Global Picnic, which takes place September 21, 2013.  The goal is to organize 1,000 picnics around the world – thus setting the Guinness World Record for the most people picnicking in a 24-hour period – to promote awareness, education and change.