Many of you have seen our “Spotlighted Blogger” series, where we talk with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. Well for the first time on our blog, we’re talking with a “Facebooker.” Kim started her Facebook page, Pulmonary Fibrosis Awareness, after her father passed away from idiopathic pulmonary fibrosis (IPF). She recently took some time to talk with us about her experiences with the disease and the benefits of online patient communities.

Can you tell us a little about yourself and your experience with IPF?
My father was diagnosed with IPF in July of 2006. He always had a chronic cough and never got it checked out until one day it got really bad and my step mom made him go get checked out. He had a chest X-ray and the doctor gave him the tentative diagnosis of IPF. Surely, the only true way to know if a person has IPF is through a lung biopsy so that’s what he had done, I believe in September of 2006.

There was a complication during the biopsy. His lung collapsed and he was in the hospital for about 6 weeks. The lung never did fully inflate. He ended up having 2 chest tubes while in the hospital. He was in good spirits though, always reassuring me that he was doing well and things would get better. Over the next few months he started the process of getting on the lung transplant list at Duke University. He did all the rigorous testing and lost the weight. I went to take care of him for a few days and while he had trouble with catching his breath when walking around, he was still walking on the treadmill to lose that weight. He was in good spirits even though he was exhausted. He was on oxygen therapy 24/7. At Christmas time, we spent the day together and he had a hard time talking because he couldn’t breathe very well. It was the last time I heard my father speak.

A few days later they moved to NC where they waited for the call. His health deteriorated quickly and about a month later he was rushed to the hospital because he couldn’t breathe. It was a Thursday when I got the call from my step mom that my dad was intubated and that my sister and me needed to go down to NC to be with him. She informed us that it wasn’t good and that it was the end. It was the hardest trip I ever had to make.

We walked up to his hospital room in the ICU and I slowed down before we got to his room and I looked in and backed away and fell to the floor, crying. I couldn’t believe that my father, this strong man, was lying so helpless in a hospital bed, so dependent on machines to keep him alive. The kind staff at the hospital helped me go to my father in the room where I sat by his side. I didn’t hold his hand right away. Touching isn’t something he liked so I respected that. We spoke with the doctors and nurses and organ donation coordinators. We waited as long as humanly possible for lungs to become available. It was decided that Saturday he would be taken off the list because he had been intubated too long and his heart was working too hard. We could have extubated on that day but I know my father and I believed he wanted to be an organ donor. So we postponed his passing by one day so that the donor team could get ready with recipients.

The next day around 7:30am we arrived at the hospital to say our goodbyes. I remember checking his monitors pretty regularly and when we walked in his heart rate was around 70 and when my sister and me finally held his hand, his heart rate went up to 87. We talked with him privately about what his final wishes were. We knew he couldn’t talk but we wanted to talk to him anyway and try to get any sort of response out of him. We waited a couple more hours for the stuff to be put in place and then they wheeled him down to the operating room. We waited in the family room for a few minutes where the coordinator went over with us what to expect. They said that if he breathes on his own for 10 minutes after he’s extubated he will be intubated again and taken back to his room. But this never happened.

We were there for him during his final minutes. Telling him that it was ok to move on, that we would be ok. I am next of kin so it was my decision to make him an organ donor and my decision to take him off life support. It’s my signature on those papers. Something I will never be able to change. The hardest thing I’ve ever had to sign in my life. We watched as he peacefully tried to breathe. After his last breath, we all continued to sob and the doctor confirmed that he had passed.

We had approx 2 minutes to say our final goodbye before they wheeled him in to the OR for organ recovery. It wasn’t a good atmosphere for us to be in when he passed because there were teams of doctors and nurses standing in this big room with us waiting for him to pass. But I tried not to focus on that part too much. My step mom was at the helm, talking to him while he tried to breathe. At about 10am on Jan 28 2007 my father passed away waiting for a lung transplant due to IPF.

You’ve been very active in the IPF community for a long time. How have you seen online communities help patients and caregivers with IPF?
I created the Pulmonary Fibrosis Awareness (PFA) group on Facebook initially as a memorial to my dad; just a place for my friends and family to go to remember him. It now has almost 5,000 members. I have met so many wonderful people through this group. Many who are patients and care givers. All have been affected by IPF in some way. This online group has become a community where they can share their experiences, trials and tribulations. A lot of members go on there to just read about other people’s issues. We have several “regular” members that post quite often. I feel like if I hadn’t made this group, some of these members never would have met and that is so humbling to me. Having an online community really helps in this digital age because many of those struggling with IPF aren’t able to leave the house or have trouble getting around in the community, so they are able to reach out and socialize over the internet. I am proud to have helped in that way.

How do you think information sharing platforms like PatientsLikeMe benefit patients?
I think it’s a fantastic tool for those dealing with any illness to track their progress. It’s multifaceted, somewhat user friendly and very well put together over all. It’s another great outlet for those who can’t leave the house due to their illnesses or those who can but want to document their life.

What are some other helpful resources that you think IPF patients should know about?
There are so many communities and organizations available to IPF patients. The PFA group is partnered with the Pulmonary Fibrosis Foundation, so a lot of our members come from there and some of the members of PFA go there for resources. There’s also the Coalition for Pulmonary Fibrosis. I get a lot of newsletters from them. They were the first organization to tell me about the new drug pirfenidone when it was in its clinical trial stage and now it’s in the manufacturing stage.

What’s one thing you think every patient with IPF might not know, but should?
MAKE MEMORIES STARTING NOW! I will never be able to create memories with my dad anymore. Had I known he was going to pass so quickly, I would’ve spent more time with him, called him more etc. Each day is a gift and each day a new memory should be made. Cherish them. You never know when it’ll end.

If you’re living with IPF, find others just like you in our growing community of almost 400 IPF 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 and in the IPF forum.

Say ‘hello’ to Monica. Some of you may know her on PatientsLikeMe as msajstall. She was diagnosed with multiple sclerosis (MS) back in 2005 and has been a member of the PatientsLikeMe community for 6 years now. She recently took some time to talk with us about her diagnosis, finding the right healthcare coverage and the importance of connecting with others.

When were you diagnosed with MS and what changes did you have to make in your daily life?
I was diagnosed in January 2005 after numerous complaints about not being able to feel my legs. I noticed the sensation changes primarily when I walked up stairs. I also noticed that I had lost sensation when I used the bathroom. That particularly scared me, so I went to the hospital and stayed there for 5 days. That’s when the doctors came in and gave me the diagnosis.

I was actually very scared of the diagnosis and I didn’t know much about MS at the time. The doctor did tell me that I would be in the hospital about 5 days more before he would discharge me. At that time, I was not working but I was searching for employment. After finding out, I researched MS along with continuing my job search. After discharge, I noticed how much information was available online dealing with MS and it overtook my job searching.

After you decided to stop working, what challenges did you face continuing your healthcare coverage?
I did not decide to stop working until 2 years after the diagnosis. I decided to get approved for disability through the Social Security Administration prior to leaving the workforce. My neurologist was my number one advocate. Once I applied and the process started, I got approved in 82 days. To me, that seemed like confirmation that I made the right decision. Although I didn’t have long to wait to be approved, it did not make it better for me to accept that Medicare would be my healthcare coverage from age 35 on out. The system was not created to care for 35 year olds and I knew there would be challenges. And boy was that a TRUE thought.

How has an online community like PatientsLikeMe helped you along the way?
PatientsLikeMe has helped me tremendously. When I was diagnosed, the MS community was much smaller than it is today. The forums always seem to really help me. If I have a question, it most likely has already been asked on PatientsLikeMe. I can truly say when I decided to change my disease-modifying drug, there was a whole forum talking about the drug and it really convinced me.

What is one thing you think every MS patients should know?
MS patients must realize that they are not in this fight alone. Besides predominate non-profit organizations dedicated to MS (National Multiple Sclerosis Society, Multiple Sclerosis Foundation, and Multiple Sclerosis Association) there are so many self-help groups that help with things. PatientsLikeMe gives us a voice that can help us to face our problems. PatientsLikeMe makes us feel that we are being heard. I truly appreciate the moderators of the forums and PatientsLikeMe as a whole.

Neuropathy Awareness Week is May 13^th-17^th and The Neuropathy Association has dedicated a page of its website to those who are getting involved. You’ll find images of people who are helping raise awareness at events all over the country. They’ve also created a list of upcoming events including a walk-a-thon and live Facebook chat.

Close to 20 million Americans live with this peripheral nerve disorder and while it’s most common among adults, it can start at any age. It’s frequently misdiagnosed or dismissed as a side effect of another disease like diabetes. In fact, 30% develop from an unknown cause, called ‘idiopathic.’[1]

If you’re living with peripheral neuropathy, find others just like you in our growing community of almost 1,500 neuropathy 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.

Mental Health America has been raising awareness for those with mental illness each May for more than 60 years, and this year’s theme is Pathways to Wellness. Here are just a few of their ‘key messages’ for the month…

• Wellness – it’s essential to living a full and productive life
• It’s more than an absence of disease. It involves complete general, mental and social well-being
• Whatever our situation, we’re all at risk for stress

They’ve created a terrific toolkit that you can download with info on what exactly wellness is and four simple steps for taking care of your mind and body. You can also check out their wellness calendar that has a different wellness tip for every day of the month.

If you’re living with a mental illness, find others just like you in our growing mood communities 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.

CAMBRIDGE, Mass.— May 13, 2013—PatientsLikeMe and the nonprofit Center for Information and Study on Clinical Research Participation (CISCRP) announce a new partnership with global healthcare leader Sanofi (NYSE: SNY) to raise awareness about the benefits of participating in clinical trials. The partnership will focus on: spotlighting “Medical Heroes” (those who “give the gift of their participation in clinical trials” to advance medical knowledge); increasing patient awareness about clinical trial opportunities; and advancing PatientsLikeMe’s mission to accelerate research by analyzing patients’ real-world disease experiences.

The partnership will utilize the PatientsLikeMe’s Clinical Trial Awareness tool to match patients with relevant Sanofi clinical trials and CISCRP’s educational materials to inform patients and their support network about the clinical research process. Through the tool, patients can search for and be notified about trials based on age, sex, disease or condition, and location criteria.

As part of this collaboration, the clinical trial tool on PatientsLikeMe will become part of Sanofi’s clinical trial recruitment process for a range of conditions, including asthma, cardiovascular disease, diabetes and oncology. Additionally, the partners will work together to raise awareness among doctors of the benefits of clinical trials for their patients. This collaboration adds to CISCRP’s expansive outreach and education channel, including clinical research and health professionals, disease advocacy groups and patient communities.

“Tens of thousands of people are actively engaged in monitoring their health and sharing their experiences on PatientsLikeMe,” says PatientsLikeMe Co-founder and Chairman Jamie Heywood. “They’re not just helping each other, but contributing directly to research. They are heroes in the truest sense, ideal partners for medical discovery, and the best source for real-world, real-time evidence.”

“An integrative approach that combines patient education with recruitment communication is essential to engaging informed study volunteers,” says Ken Getz, CISCRP’s founder and chairman. “We’re very excited about our involvement in this groundbreaking collaboration.”

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.

About CISCRP
The Center for Information and Study on Clinical Research Participation (CISCRP), now in its ninth year is a nonprofit organization dedicated to educating and informing the public, patients, medical/research communities, the media, and policy makers about clinical research and the role each party plays in the process. CISCRP provides a broad portfolio of products and services to educate and engage patients and enhance the participation experience. For more information about CISCRP’s educational initiatives visit www.ciscrp.org.

Did you know that May 12^th was chosen for International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) because it’s also Florence Nightingale’s birthday? She was a statistician, social reformer and is credited as the founder of modern nursing. It’s also believed that she suffered from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). That’s just one of the several conditions highlighted on International Awareness Day. Some others are…

• Fibromyalgia (FM)
• Gulf War Syndrome (GWS)
• Multiple Chemical Sensitivities (MSC)
• Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
• Lyme disease

May12.org is hosting a 2013 Awareness campaign on their Facebook page that you can participate in right from home. They’re also encouraging everyone to help spread the word by calling local representatives and asking family members to participate.

Lupus awareness has been observed since 1977. It was originally just one week in September. It’s since moved to October and now finally to May. And while the month may have changed, the message has always been the same; “raises awareness, secure funds and support those who are suffering” from this chronic inflammatory disorder.

There are events planned throughout the month that you can get involved in. There’s World Lupus Day on May 10^th, Put on Purple Day May 17^th, and the Lupus Awareness Faith-Based Weekend May 18-19. There’s also the Walk to End Lupus Now. Check out the Lupus Foundation of America website to find a walk near you.

If you’re living with lupus, find others just like you in our growing community of almost 4,000 lupus 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.

May is Huntington’s Disease (HD) Awareness Month and the Huntington’s Disease Society of America (HDSA) is helping spread the word. For each day of the month, the HDSA is sharing the real-world experience of someone affected by this neurodegenerative disease: patients, caregivers, social workers, doctors and public servants. You can see the latest every day on their “Faces of HD” page.

There are also HD events planned throughout the month and all over the country. From Rhode Island to California, Michigan to Missouri, you’ll find one close to you to join. There are runs, walks, bowling, dinners and more.

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

One word comes to mind when describing my recent experience at TEDMED 2013 – WOW!  Held annually at the Kennedy Center in Washington D.C., TEDMED is a conference unlike any other. For 3 ½ days you are immersed in the ideas and creativity of people from around the world who bring diverse perspectives to some of our greatest challenges in healthcare.

For me it was especially awesome because I contributed to the ‘wowness.’ I had the privilege of being a TEDMED 2013 speaker – in fact, I was the first nurse to ever take the TEDMED stage.

My talk addressed the question “Does anyone in healthcare want to be understood?” At first glance the answer to this question seems obvious – “yes, of course we all want to be understood.” However, if you consider how many words used in healthcare are Latin or Greek, insider jargon or acronyms, the answer is not so obvious after all.

I reminded the audience that the language of health is missing the words and experiences of those we say are at the center of healthcare – patients. It’s time to move beyond the rhetoric of patient-centeredness to actually include the lexicon of patients in the language of health.

At PatientsLikeMe we have been doing just that for many years. We retain the words and phrases patients use to describe their symptoms and side effects while behind the scenes we match them to the words used by doctors and health professionals. With your help, we are creating the world’s first patient vocabulary.

By the end of my talk I offered the answer to the question “Does anyone in healthcare want to be understood? Yes, patients want to be understood.”

It’s time to humanize the language of health with the lexicon of patients.

May is amyotrophic lateral sclerosis (ALS) Awareness Month. As many out there know, PatientsLikeMe was inspired by the life experiences of Stephen Heywood, who was diagnosed with this serious neurological disease back in 1998. Stephen’s brothers (Ben and Jamie) made many attempts to slow the progression of his condition, but their trial-and-error approach just wasn’t working. They knew there had to be a better way, and in 2004 PatientsLikeMe was created.

Every year, about 5,600 people are diagnosed with ALS in the U.S. It can affect any race or ethnicity and there is currently no treatment or cure that will reverse or even stop its progression.[1] By getting involved, you can help change that.

The ALS Association has put together a terrific calendar of events called “31 Ways in 31 Days.” For each day in the month they’ve created a simple way to get involved and help raise awareness.

You can also find upcoming awareness events on the ALS Therapy Development Institute calendar. There will be picnics, charity golf tournaments and “The Cure is Coming” 5k and awareness walk. And don’t forget, we’d love to sponsor your run/walk team through our PatientsLikeMeInMotion program. Your whole team will get free t-shirts, a donation and more!

Looking for more info on non-profits during ALS awareness month? There are a bunch of organizations dedicated to the cause. A fellow PatientsLikeMe community member put together a great list in his forum thread Comparison of ALS/MND Organizations.

If you’re living with ALS, find others just like you in our growing community of almost 6,000 ALS 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.

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.

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 31,000 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.

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.

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.

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.