14 posts from March, 2013

Finding Peace, Confidence and Lifelong Friends: An Interview with Psoriasis Patient Erica

Posted March 27th, 2013 by

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.

Erica Psoriasis Patient CROPPED

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!


American Diabetes Assocation Alert Day – Is Today Your Wake-Up Call?

Posted March 26th, 2013 by

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.

National Diabetes Alert Day 2

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.

National Diabetes Alert Day 1


Can Social Media Strengthen Science?

Posted March 25th, 2013 by

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.


New on the PatientsLikeMe Team: Sally Okun, VP of Advocacy, Policy and Patient Safety

Posted March 21st, 2013 by

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.

Screen Shot 2013-03-21 at 1.20.45 PM 

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.


New To the PatientsLikeMe Team: Kim Goodwin, UX Expert

Posted March 19th, 2013 by

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.

Kim Goodwin- Vice President of User Experience

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.


PatientsLikeMe Names Kim Goodwin and Sally Okun to New Web and Patient Advocacy Positions

Posted March 19th, 2013 by

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.


A Traumatic Brain Injury Can Happen to Anyone

Posted March 18th, 2013 by

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?

Brain Injury Awareness Month Banner

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.

Brain Injury Global Picnic Logo

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.


Attending Partnering with Patients…as a Patient

Posted March 14th, 2013 by

Last Friday we heard from PatientsLikeMe Head of Community Liz Morgan about her experiences at the Institute of Medicine’s Partnering with Patients workshop.  Today we hear from multiple sclerosis (MS) patient Laura Phillips, a PatientsLikeMe member who spoke at the event. 

As a speaker at the workshop, Sally Okun, PatientsLikeMe’s Health Data Integrity & Patient Safety Director, invited me to speak for the patients of PatientsLikeMe as her co-presenter.

IOM Workshop - LadyMac

I had everything worked out to exactly what I wanted to say and right in front of me so I wouldn’t forget, but I couldn’t tell you what I even said. LOL.  I know I didn’t want to look down and read, it needed to come from the heart and what I could remember.  I thought I’d freeze and not be able to say a word, but after introducing myself I felt really comfortable with looking at the audience and speaking.  Even with Liz Morgan, Head of Community at PatientsLikeMe, taking pictures, I was able to talk.

There was a large, diverse group of people attending and presenting. I wish I could do a better job of portraying the event, but it was large. Healthcare, patients and families were the subjects of the workshop. Lots of ideas were put forth on everything from how to improve the healthcare system to how to make patient records available to the patients electronically, such as recording doctor visits and putting them on a CD for the patient to keep and play for other family or friends who were not at the appointment.

Recording doctor visits is something I’d love to see. How many times have you left the doctor’s office and each person present remembers the visit differently? Or you can’t remember if you discussed a particular test or not?  I did push the importance of the patient keeping hard copies of ALL tests, doctors’ notes, you name it, get a copy.  I would love to see the ability of viewing my records electronically so I could view my results quicker, make notes to ask the doctor, etc. There was also talk of submitting questions for the doctor in advance for the doctor to review and be more prepared for the visit. Also, the staff would print a copy of your submitted questions so you would have it in hand and remember what to talk about.

There was way too much to compress into a brief review of the event, but there were a lot of really good, logical ideas presented.  How many of the things discussed will eventually become a reality? Only time will tell. Privacy will be a major roadblock I fear.  Everyone that I heard talk did agree that collecting data from the patients themselves was important, and PatientsLikeMe was mentioned more than once by others there.

IOM Workshop - Sally and LadyMac Closer

Sally and Liz were a delight to meet and spend time with, as we are all passionate about PatientsLikeMe and how it has helped many of us through the years.   Really had a great time, and I wish I could have spent more time with Sally and Liz, but the time we did spend talking was productive and invaluable.


PatientsLikeMe Unveils New Tool to Match Patients with Clinical Trials Worldwide

Posted March 13th, 2013 by

Launch at European NHS Healthcare Innovation Expo Comes as PatientsLikeMe Chairman Calls for Revolution in Disease Measurement

CAMBRIDGE, Mass. —  — The U.S.-based patient network and real-time research platform PatientsLikeMe unveils its global clinical trials tool today at Europe’s Healthcare Innovation Expo 2013, hosted by the National Health Service (NHS). The free tool, unveiled today by Research Director Paul Wicks Ph.D., draws on open data to match patients from around the globe with clinical trials based on their condition and location. The U.S. prototype was launched last year and has already helped thousands of patients find suitable clinical trials.  The tool is available at http://www.patientslikeme.com/clinical_trials.

Last week, PatientsLikeMe Co-founder and Chairman Jamie Heywood spoke about innovative solutions to healthcare at the 2013 Nuffield Trust Health Policy Summit in London. Nuffield Trust is an independent source of evidence-based research and policy analysis for improving health care in the UK. Heywood returns to London tomorrow to speak on the Expo’s Masterclass Stage about the importance of measurement in building a learning health system.

In his Nuffield speech, Heywood called for a “revolution in measurement,” or what he calls “measurement-based medicine.” He adds, “We should measure the severity of each condition and its impact on the patient. The measurement should support the patient in life choices, clinicians in care choices and researchers in learning what’s effective. And every patient should be measured as part of the care process to the degree appropriate for the severity of their condition, so that their experience can be used to guide the next patient.”


Creating a Revolution at the Nuffield Trust Health Policy Summit 2013

Posted March 11th, 2013 by

Last week, health leaders from around the world gathered in the UK for the Nuffield Trust Health Policy Summit 2013, a two-day event focused on evidenced-based research and innovative solutions to the challenges facing the National Health Service (NHS).  One of the invited speakers was PatientsLikeMe Co-Founder and Chairman Jamie Heywood, who discussed the drug development process as well how patients can drive value in healthcare.  Tune in to hear Jamie’s well-received presentation below, which was titled “Creating a healthcare revolution.”

Health Policy Summit 2013: Jamie Heywood from Nuffield Trust on Vimeo.


Partnering with Patients to Improve Healthcare

Posted March 8th, 2013 by

Last week I had the pleasure of attending the Institute of Medicine’s (IOM) Partnering with Patients workshop, where PatientsLikeMe’s Health Data Integrity & Patient Safety Director Sally Okun, RN, MMHS, and PatientsLikeMe member Laura Phillips, who has multiple sclerosis (MS), shared the stage as co-presenters. It was a novel approach to incorporate a patient co-presenter into our presentation, and Sally reported that it made the experience quite special for her.

The day-and-a-half-long meeting brought together clinicians, researchers, policy makers, advocates, patients and caregivers—people who all care about creating better value and improving the quality of healthcare in the US. In the opening remarks by IOM Chairman Michael McGinnis, whose arm was in a sling, we were reminded that everyone is a patient at some point, but most don’t always have that mindset.

IOM Workshop - Sally and LadyMac

The meeting covered many topics, including the problems with healthcare that are complicated and hard to change. Coming from the PatientsLikeMe community team, the topic that struck me most was empowering patients to meaningfully participate in the decisions that affect them, such as which treatment to take or which doctor to see. There are many barriers to finding the answers, and we have a long way to go in making the answers more accessible, but I was happy to reflect on how our growing community of 180,000+ patients is already becoming more involved in their care by sharing their symptom and treatment data with each other.

Here were two other key takeaways from the workshop, as well as a look at how PatientsLikeMe is addressing each issue:

1. Patients need more information – and better information.

We heard that patients don’t have enough information, and they don’t know how to use the information they do have. Research articles are convoluted, access is limited, options aren’t presented; and as we heard from rheumatoid arthritis (RA) patient Kelly Young, who writes the blog RA Warrior, textbook definitions may not apply to everyone.

In contrast, our PatientsLikeMe community is sharing what’s normal to them, helping others interpret and digest research and creating a real-world database of what is actually going on with their health conditions. That way, members can learn the different treatment options and disease courses, discover the questions they haven’t yet thought about, and decide what’s right for them.

IOM Workshop - Sally and LadyMac from Right Side

2. The entire doctor/patient culture could use a tune-up.

There was a massive call for a “culture change” in many areas of healthcare, including the way clinicians and patients interact. Jeff Belkora from the University of Califormia, San Francisco, and his team of pre-medical interns shared how having an advocate can make a big difference in doctors’ appointments. For example, an advocate can help you define your questions, actually ask them in the office and be an active participant in making decisions about your care.

While some argue the culture change needs to come from both patients and clinicians, PatientsLikeMe members are already taking huge leaps in demanding to be heard. Members are sharing that it’s okay to fire your doctor, learn from others the right questions to be asking and arrive at doctors’ appointments with your own data in hand, including PatientsLikeMe’s handy Doctor Visit Sheet.

Overall, it was great to see so many people focused on making healthcare better, and that all of these various groups are looking to other consumer models for best practices. I truly felt that the workshop attendees were dedicated to listening—and finding new ways to listen—to families and patients in the name of better care.

What did PatientsLikeMe member Laura Phillips think of the IOM workshop?  Check out her take.

PatientsLikeMe member emorgan


PatientsLikeMe in the News

Posted March 6th, 2013 by

It’s been a busy couple of weeks at PatientsLikeMe.  Here are a few media highlights showcasing all the exciting things that are going on, from new partnerships with Aetna and Boehringer to the major grant we were awarded by the Robert Wood Johnson Foundation to TED2013 Fellow Paul Wicks’ presentation at TED2013 last week.

Paul Wicks at TED2013

PatientsLikeMe Is Building a Self-Learning Healthcare System
(Forbes)

Social Network Could Revolutionize Disease Treatment
(Wired)

PatientsLikeMe Leads Crowdsourcing for Patient Outcomes
(Fierce Biotech IT)

What the NHS Can Learn from Innovative Health Practices Abroad
(The Guardian)

Boehringer Partners with PatientsLikeMe on Rare Disease Community
(PMLive)

Networking Medicine: Patients Take a More Active Role in Science
(The Scientist)

PatientsLikeMe:  Crowdsourcing Healthcare
(AllVoices)

For more PatientsLikeMe media coverage, visit our Press page.


“Stiff Lungs” -Ian’s Personal Journey from Idiopathic Pulmonary Fibrosis Diagnosis to Lung Transplant

Posted March 4th, 2013 by

“Short of Breath? See your Doctor,” said the poster in the pharmacy. I’d been short of breath for some time, but put it down to an unhealthy lifestyle, being 58 and being overweight. The poster encouraged me to visit my doctor, which I did. He sent me for a chest X-ray and I could tell by the reaction of the technician that he’d seen something. He discussed the X-ray with a doctor who then arranged for me to see my own doctor that afternoon.

Screen Shot 2013-03-04 at 3.38.46 PM

My doctor explained the X–ray had shown I had ‘stiff’ lungs and that I should see a specialist a few days later. At this point I wasn’t too concerned. I was still convinced I would be told to just exercise more and take some pills. After seeing the specialist and having more tests, he told me that I had Idiopathic Pulmonary Fibrosis (IPF) and explained what it was. He also told me that left untreated I could expect to live about another 18 months! You can imagine going home and telling this to my wife and kids.

I’d never heard of it before so the first stop was the Internet. Most of the sites you visit frighten you to death. You find out the mechanics of it, the prognosis, but not how people live and deal with it. PatientsLikeMe gives you direct access to other people in your situation. It’s nice to hear from people who have had it for many years, what drugs they take, how those affect them, what they are doing themselves to keep a good quality of life and so on. Everybody is different of course, the illness progresses differently in each person, so it’s interesting to see all the variations in medication.

I have to say, I never believed at any point that I was going to die. I was bloody determined to have a transplant. I wasn’t going to die. I had to meet certain criteria to get on a lung transplant list and one thing was weight. I weighed 118kg (260lbs) when I was diagnosed and had to be 90kg (198lbs) to get on the list. So I started walking. I could only make it half a mile to start, but eventually got up to 5 miles with the help of an oxygen tank. It took nine months, but I dropped the weight. Then, everything happened very fast.

I was accepted onto the transplant list on a Friday, got a 12am phone call on Sunday about a possible transplant and was wheeled in for surgery that same day. They could only harvest one lung, but it was better than nothing. When they were taking me back for surgery I remember saying “bye” to my wife. I could tell she was hoping for something more than that. I probably should have added the ‘see you later.’

There were a few complications with my ribs post surgery and sometimes when I walk upstairs it feels like I only have one lung, but I’m glad to be alive, really. I was and am lucky to have a wife who has worked as hard as me, if not harder, to help make all this possible. Having support around you does make a difference. Sometimes you don’t realize it, sometimes you take it for granted, sometimes it’s frustrating having to have help doing things you used to easily do. And it’s great when you can give things back, like a nice roast dinner or some favorite biscuits that are within your capabilities. I do consider myself to be very lucky.

Ian is a member of the growing IPF community on PatientsLikeMe where people track, connect, and learn how to manage the condition together. Every experience shared by patients about this rare lung condition is also contributed to a data set on PatientsLikeMe that helps researchers uncover new insights about the disease. Do you have IPF or know someone who does? Sign up for PatientsLikeMe and start living better, together.


Living with Idiopathic Pulmonary Fibrosis

Posted March 1st, 2013 by

What is idiopathic pulmonary fibrosis (IPF)? How many people does it affect? Do we know what the cause is? Can it be treated? If you don’t know the answers, you’re not alone. IPF is considered a rare disease by the National Institutes of Health and much of the research surrounding it is not definitive.

© Kempski | Stock Free Images &Dreamstime Stock Photos

So what do we know? IPF is a degenerative condition with no known cause that gradually scars a person’s lung tissue. As more and more tissue scars, the lungs slowly lose their ability to transfer oxygen to vital organs. This can lead to shortness of breath and dry coughing. As the condition progresses, everyday activities become exhausting – just climbing a flight of stairs can be a challenge. It usually affects people between the ages of 50 and 70 years old. More than 100,000 people in the US are diagnosed every year and nearly 40,000 will pass away. The only known cure is a lung transplant.

If you’re living with IPF, find others just like you in our growing community of more than 900 IPF patients. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile and in the IPF forum. If you haven’t read about our collaboration with Boehringer Ingelheim to create this customized IPF experience on PatientsLikeMe, check it out here.

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