29 posts in the category “Idiopathic pulmonary fibrosis”

“I thank my donor every day for this gift”: Member Laura shares her lung transplant story

Posted March 17th, 2017 by

Meet LaurCT, an active 2015-2016 Team of Advisors alum living with idiopathic pulmonary fibrosis (IPF). She underwent a left lung transplant at Brigham and Women’s Hospital in Boston in January and recently shared her experience with us.

How are you feeling these days? 

I am feeling great. I’ve had a couple bumps in the road but nothing that the transplant team hasn’t seen before, and [they] handle it immediately. It was scary for me but the team is great in communicating that these [post-transplant] issues happen to some and not to worry. I like that communication because it sets my mind at ease.

How long had you been a candidate for a lung transplant? 

I was evaluated at Brigham and Women’s Hospital (BWH) in January of 2014 and accepted into their transplant program. At the time, I was classified as too healthy to be listed, however I was being watched and met with them every four to six months. In October 2016, BWH suggested I be re-presented and get listed on UNOS (the United Network for Organ Sharing waiting list) for a transplant. After finishing some additional testing, I was listed in Boston Region 1 on December 16, 2016. I also finished the evaluation process at New York Presbyterian Hospital/Columbia around the same time and about December 8, 2016, I was listed on their regional UNOS list for a transplant.

You shared in the forum about having a “dry run” in December 2016, when you were called in as a backup candidate for a transplant but the lungs went to another person. How did you feel when that first call fell through for you? 

As I said in the forum, my daughter and I went to NY Presbyterian with no expectations. While driving, we were calm and I think we both knew this would be a dry run. We didn’t even really call anyone to let them know we were heading there. It gave me comfort to know that the person who needed those lungs the most got them. Many times the lungs are not usable and these are now breathing in someone’s body, giving him or her the gift of life.

What was it like to get “THE CALL” again, leading up to your actual transplant? 

January 6 was a difficult day for me emotionally. We terminal patients have those days, accept them, then put on a happy face for our loved ones. My daughter made supper (not a usual thing – haha) and we were just about ready to sit down to eat. It was 5:30 p.m. My phone rang and without looking at it, we knew. My daughter got up and went upstairs to get ready as I was answering the phone.

I was a primary [candidate] for a left lung, and we knew in our hearts this was it. We headed to Boston immediately. I headed into surgery at 11 a.m. on January 7, 2017. While I was in surgery, my daughter received a call from NY Presbyterian saying they had a lung for me. That rarely happens, if ever. My journey was meant to begin on January 7 at BWH. That was the day there was a 25-car pile-up on the way to New York. I would have never made it in time [for the transplant there].

Can you share some more of your transplant surgery experience with us?

I know that when I woke up after surgery I did not have any pain – I still have not had any pain. They put me on .5 liter of oxygen after, and when I woke in ICU, I took it off. I was breathing on my own from the beginning. My surgery finished at 5 p.m. (ish) on January 7. I did everything they told me to and was released to go home on January 13. Six days after a left lung transplant. This was meant to be.

 

What has been the most difficult or surprising part of your recovery? 

I had a couple of bumps in the road but those were nothing. I need to stress that the most difficult part is the emotions for me and for my caregiver. We don’t stress the caregiver enough. As my daughter said, the prednisone has turned her 66-year-old mother into an adolescent child at times. That is difficult for any caregiver to handle. It’s a 24-hour job for them. We just need to recover, but we can’t do it without them. I’m blessed to have her and she says we will get through this because the alternative is not an option.

You’ve referred to transplant day as “Miracle Day.” What would you say to your organ donor? And to people considering organ donation? 

I wake in the morning and thank my donor and the donor family every day for this gift. I never thought about organ donation much until a friend of mine needed a kidney and then I needed a lung. Doctors perform miracles every day not only by transplanting an organ but using the right combination of drugs to keep our body from rejecting it. Giving the gift of life to someone else is the most selfless act someone can make, and those of us who need it will forever be grateful. I plan to honor that donor by doing my part in staying alive.

How will you use PatientsLikeMe now that you’ve had a lung transplant? 

I’ve been pretty vocal [asking] about the post-transplant experience when a few of the PatientsLikeMe folks had their transplant. It’s the only piece that we don’t seem to share. I get it – I’m about two months post-transplant and I’m trying to recover. I plan to keep giving back. I will begin posting/blogging again about my experience so others also will know that whatever is happening post-transplant, some others have the same issues. Sharing our experiences and our data is important, and it makes us feel less alone. People like John_R, who I talk to – he says he has had the same experience or experienced something else. It helps those of us who follow to get through it.

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Meet Glenda from the PatientsLikeMe Team of Advisors

Posted December 29th, 2016 by

 

Meet Glenda (gagafor2), a member of the 2016-2017 Team of Advisors. Glenda is a wife, mother and grandmother who finds great joy in making others happy. She’s also living with idiopathic pulmonary fibrosis (IPF).

Recently, Glenda told us about coming to terms with the “unknown” in her future and coping with anxiety: “PatientsLikeMe became my lifeline to information and patients who knew what I wanted and needed to know.” Check out the rest of her story and learn how Glenda hopes to represent other members of the IPF community.

What gives you the greatest joy and puts a smile on your face?

I would have to say making others happy makes me smile. I love to give and do special things for others, it gives me great joy I get so excited when I can find that special gift or plan that special surprise for someone else. My family gives me the greatest joy of all. I have had a wild ride so far with my husband of 45 years and my children and grandchildren. We moved many times throughout the last forty years to different parts of the country, making so many incredible friends and have having such wonderful memories. Yes, I still print out some of my photos just to pass on to my children and granddaughters so they can also look at, hold, and remember all the great memories that will live on throughout time. I am a pretty sentimental person. Our little granddaughters six and nine are so much fun and they give me a reason to fight with all I have and to live my life the best I can.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

My greatest obstacle with being diagnosed with a terminal illness is the unknown. Not knowing to me like being in a dark room trying to find my way around, just stumbling around seeking help. Most of my family and friends always tell me “you look so good.” Yes, I do look good, makeup, hair color, and clothes can paint a pretty picture. Inside is the emotional and physical picture they do not see, nor the frightening experience of the what ifs that can happen at any time. Now I try to look at the whole picture of a person and have great empathy with what is going on with them.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

Living with idiopathic pulmonary fibrosis is a day by day experience. Sometimes when it is hard to breathe or get a good breath it is frightening and I need to calm myself and do my pursed lips breathing to get my center and not let the anxiety run away with me. I also have generalized anxiety. One of my biggest fears has always been not being able to breathe and yes here I am diagnosed with something that can throw me off the cliff big time

Most days are good and I go on taking it one day at a time, even knowing it is a progressive disease and could change at any time with an exacerbation. I have become germ phobic trying not to get an infection or virus to cause a decline. My husband and I own our own business so I still work, now on a reduced schedule. Fatigue is sometimes overwhelming and keeps me from getting together with friends and social events as I used to. Every three months I go for pulmonary function tests which give me great anxiety before I get to the hospital to do the test. I am so afraid each time I take them that my numbers will decline. I know I cannot do a cram study for pulmonary function tests, but I do tend to over think the whole procedure for fear of lower numbers. I do take one of two medications approved in 2014 that can slow the progression of IPF in some people. Right now, I receive help paying for the drug, ($96,000 a year) but next year I will go on Medicare so that gives me financial worry also. I have heard of patients not having insurance or being able to afford the cost of these drugs, which makes me angry and sad. Something needs to change for people who need these kinds of medications.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

When I was diagnosed with interstitial lung disease I was not given much information or why I might have gotten it. I began to look on the internet to find out what I might have. I learned that IFP was the worst kind of interstitial lung disease with no cure and a life expectancy of 2-5 years.  Boy, did I have a huge panic attack, checking into the ER. I then had testing done to confirm what I had, and then getting a phone call at work telling me I had IPF. It was so traumatic to be told this over the phone with no explanation just to wait until my next appointment in 2 months.

How important has it been to you to find other people with your condition who understand what you’re going through?

PatientsLikeMe became my lifeline to information and patients who knew what I wanted and needed to know. This amazing site gave me information, advice, and hope. Please get all the information you can so you will know the right questions to ask your doctor. I have found through my own experiences in the health care system you need to be proactive and not reactive with your health and the information you need. Please go seek supports groups and places like PLM to speak with others who have already experienced what you are going through. Then pay it forward to someone else who is newly diagnosed. We all need each other. 

Recount a time when you’ve had to advocate for yourself with your <provider, caregiver, insurer, someone else>.

A few years ago, I became very sick not able to function at all. I gave my symptoms to my physician over and over without him getting to the exact cause. This went on for a year. My doctor became impatient and annoyed with me, making me feel like a stubborn patient because I kept coming back not getting any better. I finally asked him “would you like me to see another doctor?” I don’t believe he had ever been asked that question before. I did change physicians and we finally got to the bottom of the problem. We only have one body and we are the only ones who can advocate for the best treatment we can get. I try to learn as much as I can before I visit a physician so I know the right procedures and questions to ask. I don’t like to think we are just numbers but sadly it can be that way. I have found that going in the hospital requires someone on your behalf to monitor everything being done and given to the patient.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

PatientsLikeMe gave me the hope and compassion I needed at a time I was sinking in despair. Just being diagnosed with a terminal illness is a lot to handle on your own. I immediately connected with other IPF patients who gave me sympathy but also hope. A dear friend I met sent me a book of scriptures she said she wanted to pay for and send. What an angel she has been. Then there are the friends who know so much I just can’t pick their brain enough. It is a 24/7 online support group when you need it. It has given me information to make wise choices about medication to choose, supplements to take, and ways to cope. They have helped me beyond words; I wish I could name them all but just too many. I now hope to carry the torch forward for those who are newly diagnosed to those who are further along the road we travel.

How can we make our health care work better for us?  

Tell everyone about PatientsLikeMe, how we can connect and share with other patients, put in our test results, and know how to talk to our doctors and providers while being more informed.

What made you want to join the PatientsLikeMe Team of Advisors?

The only thing I know is that I wanted to make people aware of the PatientsLikeMe website. I did not expect to be chosen. I am not eloquent at putting my thoughts in writing, nor the most informed patient. I’m just an average person who got diagnosed with a chronic illness who wants to let others know how much I rely on communicating and sharing information. I was shocked when I received the notice I was chosen.  It was only during my trip to meet my fellow advisors that it came to me why. I want patent health care to get better, patients to be more informed. I love having all the data in one place and available to share. I love being able to enter every lab test, pulmonary test and medication so all can see and compare to each other giving us the ability to make informed decisions. I value each person on the site and their willingness to share their experience, data, and all other aspects of their health care. I am an informed patient now able to have a conversation with my physician on a higher level of understanding because of PatientsLikeMe.

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PatientsLikeMe Welcomes Next Patient Team of Advisors

Posted November 14th, 2016 by

 

CAMBRIDGE, Mass, November 14, 2016PatientsLikeMe has named 11 members to its patients-only 20162017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners.

“Each year, our Team of Advisors has proven an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.”

More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington.

John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and collaborate with PatientsLikeMe and other members of the Team of Advisors. “My experience with PatientsLikeMe has been filled with exploration, information and conversation. My health journey has been positively impacted through my connection with other members, by the various tools for tracking and logging health data, and by opportunities just like this – to participate in an advisory capacity.”

The 2016-2017 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times during the upcoming year. This is the third Team of Advisors the company has formed. The 2015 team focused on redefining patient partnerships and established new ways for the healthcare industry to connect with patients to deliver better care. In 2014, the inaugural group provided feedback to the research team and discussed ways that researchers can meaningfully engage patients throughout the research process.

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. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 85 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Katherine Bragg
PatientsLikeMe
kbragg@patientslikeme.com
617.548.1375


Patients as Partners: Member Laura on launching a PF support group

Posted June 24th, 2016 by

Laura (standing on left) at the June meeting of the New Britain PF Support Group

Over the past few months, the Team of Advisors has been sharing how they use the Partnership Principles in their personal health journeys. Laura, who’s living with IPF, recently sat down with us to talk about the New Britain PF Support Group she launched in Connecticut, and how important it is to have a community of people who know what you’re going through. Check out the Q&A below to see how she helps patients, caregivers, and their families understand that they’re not alone.

Tell us a little about the New Britain PF Support Group — who’s involved and what’s the goal?

The New Britain PF Support Group had the first meeting September 2015. The meeting is for the patient and caregiver, plus family and friends who may be interested in understanding what their loved one is going through.

The goal is to provide information on PF/IPF. Knowledge can empower the patient and caregiver to work with their doctors and professional team. Most importantly, the support group lets people know they are not alone — we are all in this together and we understand.

How did you come up with the idea of creating the group?

There was only one support group in Connecticut and it was quarterly in New Haven, about an hour away from me. I would go and get such wonderful information and talk to some really awesome people, both professionals and patients. Most of the patients were from the southern part of CT, and I felt that people in the northern part of the state would benefit from a face-to-face support group meeting. I knew from going to the meetings at Yale New Haven Hospital that I always left there feeling more empowered and emotionally stronger. I wanted other PF/IPF patients to feel the same.

Since September 2015, another group has been started further west. In attending those meetings I’ve met new patients. It’s exciting to see that we are touching more and more PF/IPF patients who didn’t have face-to-face support with others who shared the same issue.

What’s the most beneficial aspect of partnering with others who know what you’re going through?

We have quarterly meetings and while the first part is educational (information about what is going on in treatments for IPF/PF), the majority of the meeting is support. If you sat in the corner and watched, you’d notice that the patients and caregivers are like sponges. They want to get information from others who’ve “been there” and they want to give others their knowledge.

At the second meeting my daughter said “Mom, they just want to talk,” and she’s so right. Meetings are supposed to be two hours, but not one has ended on time because no one wants to leave. That speaks volumes.

At our first meeting we had 23 people, and each meeting averages about that many. We have new patients who look totally devastated when they walk in and relieved when they leave. It humbles me to see how everyone touches a life in there.

How is this type of peer partnering different from your other health-related relationships?

For me, this disease has become a full-time job. I’m in a clinical trial, I am in a transplant program at one hospital and being evaluated at another at the moment. That’s in addition to going to the gym to stay strong or to pulmonary rehab maintenance. I have to make sure that all my tests are updated so life becomes one big doctor’s appointment. The doctors, coordinators, nurses, technicians, etc. are all very nice and helpful, but there is nothing like being able to vent your frustration or talk about the excitement of “passing” a test to another patient. Someone who knows exactly what you are going through. It’s priceless, really.

What have been some of the challenges of starting a support group?

I’ve been lucky, the only challenge I’ve had is getting the facility to let us start a meeting. Once that was cleared it’s been a breeze. The Hospital for Special Care has been so very good to me. The Pulmonary staff is so caring and awesome to deal with. I became a Support Group Leader with the Pulmonary Fibrosis Foundation (PFF). They provide grants to start a group and educational booklets. Most importantly they provide support to the support group leaders. I’m told by other leaders that it’s a challenge getting presenters. I’m sure I will have that issue eventually but being a new group that hasn’t happened yet.

What do you enjoy most about it?

I truly enjoy seeing the patients and caregivers. The more patients and caregivers we have, the more family and friends we can educate. The more I get out of my own head and help others, the more emotionally strong and empowered I feel. Every time I see the number of people and new people who show up or even contact me I get emotional. Makes me realize how not alone I am.

Do you have any advice for others looking to start similar groups? 

Yes: Find a place, contact Pulmonary Fibrosis Foundation, and do it. There is definitely a need.

 

 

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“You may not like it, but make the MOST of it.” – An interview with IPF member Nikki

Posted January 1st, 2016 by

When Nikki (Nimiha) was diagnosed with IPF in 2010, she was already a survivor of both ovarian cancer and a heart attack. Staying positive and up-to-date on new information is now this retired RN’s best defense – and she’s been sharing it with her IPF family on PatientsLikeMe since March.

We had the chance to connect with her recently, and here’s what we learned …

1. Tell us about your life. What are your hobbies and interests? How do you most enjoy spending your time?

I was born 71 years ago in a town named Escondido, in Ca. My mother had been a Wave in the Navy in Washington, D.C. where she met my father, a career Marine. It was war time and he was transferred to Camp Pendleton Marine base in Oceanside, where he was immediately sent overseas to fight. I was an only child with no family living close by so my Mother and I were very close. My father went up through the ranks and was up for Brigadier General, and was honored to take over training the 7th Marines at Camp Pendleton in 1962. Two weeks later he died of a heart attack and my mother and I were forced to change our lives as well as our homes and lifestyle. She moved us to a town ten miles from where I was born. I went to college at PALOMAR Jr. College where I majored in boys. I married my husband, George, in August of 1963, and became a mother June 1964. You know the plan to wait a few years just didn’t work for us. You remember I said I majored in boys. Seems I didn’t know how to count and messed up the birth control pills ‍‍. I became a stay at home mom and our son was born four years later. Amazing how quickly you learn to count when needed. As my children grew, I became restless and went back to school. I discovered I wanted to become a nurse and take care of others so that was what I did. The kids were growing up and we were all going to school. I graduated with my R.N. in 1979 and became an oncology nurse specialist. That progressed to orthopedic nurse, home care nurse, then a MDS coordinator. I retired in 1996 after my son became ill with testicular cancer. He healed, my father-in-law died, I had ovarian cancer and one Thanksgiving night after everyone went home I suffered a heart attack at 53. During the next year I had seven stents that failed, had a triple bypass and did really well until last year. Then I caught the lingering cold everyone was catching, but mine wouldn’t go away. On my birthday I finally went to the doctor after four weeks. I was placed on ABT’s inhalers, and steroids. One week later I returned unable to breathe. It was at that time I was told they heard crackles and the X-ray showed IPF scarring. I had purchased a cruise to Hawaii for our Christmas present, but was unable to go. I was on oxygen and not feeling better. The 13th of Jan. I was in the hospital with pneumonia. My life of playing bingo, gaming at the casino’s and cruising was over as I knew it. I was still able to read, enjoy my backyard, and the glorious sunsets and the multitude of hummingbirds I feed. My life was changed but not over. I was able to enjoy the little things that made me happy. I was lucky to have my husband of 52 years with me, my daughter and my ten-year-old grandson as well. They are all my daily blessings and sources of enjoyment. Don’t get me wrong, it is not always sunny, but we are managing, one hour at a time. I have my moments full of tears, but, also joy in the little things. I try to deal with what cards I have been dealt with grace. Some days are better than others.

2. You’re very supportive to others in the forum. In a recent post, you said to another member, “We care, we know, we too are frightened by our diagnosis. Don’t feel alone, that no one cares. We may not be there physically to hold you in our arms, but you have many arms around you that DO CARE.” How have you, in turn, felt supported on the site?

I try to visit the site on a daily basis and interact with my family here. If they don’t post for a while I fret and worry. They fill my need to help others to help myself. This place is my safe place. I truly believe we are family and here to help each other. I am free to tell those who understand how miserable it is on some days. They understand and perk me up with their prayers and responses. I love that we are free to share everything or nothing. This is another part of home!

3. As a former RN, how do you think your past experience informs the advice you give to others?

Most often I have to censor myself because of my prejudices toward the medical profession today. I feel I know enough to give good information and resources if needed. I am not afraid to tell it like it is. We are not here for the fairytale version of what is happening to us. We are here for truth and knowledge that what we feel is normal or not. I listen to everyone and what they say to learn for myself. I hope they can feel the love that is offered even though there is such little hope at this time. I think the main thing I give is knowledge and comfort. At least I hope so.

4. Tell us about your diagnosis. What did you do/feel in the moments following it?

Like I said, it was very sudden when it finally showed up. A few years before before I was symptomatic, it was mentioned and I recall ignoring it, saying we would worry about it when we needed to. I was breathing and living a normal life and was truly not interested in it since it was incurable and not affecting me at the time. I think I knew last year when I was diagnosed my easy time was gone. I never wondered why me, never got mad. Why not me! I think what has affected me most is I promised my grandson to take him to see the glaciers in Alaska. I cannot afford the medical supplies that includes any longer and I hate that I didn’t take him sooner. I would love to book a cruise right now, but can’t afford to lose all that money if I get worse. I investigated it earlier last month and renting the portable concentrators that go high enough and the extra batteries and the scooter make it seem so much like a dream. I think the day I realized my dream to see my grandson’s face when he saw Glacier Bay and the calving was over was the day I felt the worst. I felt my dream die and even now it brings tears to my eyes and pain to my heart. My advice to my friends and family here is do what you need to do while you still can. Don’t let this disease kill your dreams if you can still do them. DO THEM IF YOU STILL CAN.

5. How would you best describe the feeling of living with IPF to someone who doesn’t have it?

I find it can be overwhelming depending on the day and what you want to get done. I am no longer independent and able to plan ahead. I need help with shopping because the cart won’t hold my oxygen and the weeks worth of groceries. I spend several days visiting different doctors every week between me and my husband, rather than going out to do what I want. I look good, feel pretty good for all that is wrong with me, I just can’t breath good. I tend to tire more easily than before and sometimes it is hard for people to understand. Like I say, I look well just sitting there with the cannula and oxygen tank or 50′ of tubing I walk around the house with. I have a love hate relationship with the oxygen. I am grateful for it making my like livable, but hate the way it looks, the constant noise and the dry nose and mouth.

Most people don’t know anything about IPF. I TELL THEM IT IS A TERMINAL DISEASE WHERE YOUR LUNGS QUIT EXPANDING AND COMPRESSING. They have two new medicines that may help prolong life with a better quality. Nothing out there to my knowledge will cure it. A lung transplant is a possibility for some but not me. I have already had my chest cracked when I had my bypass. I am too old and too fluffy to get one. So I live each day the best I can.

6. What advice would you give to a newly diagnosed person?

TALK, JOIN, DISCOVER ALL YOU CAN. THIS IS YOUR LIFE, KEEP UP WITH NEW INFORMATION. MOST OF ALL LOVE YOURSELF AND BE HAPPY YOU CAN CHANGE THINGS TO MAKE THEM BETTER with your attitude! You may not like it, but make the MOST of it.

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Your data doing good: IPF treatment experiences

Posted December 12th, 2015 by

Every minute of every day, people are sharing their health data on PatientsLikeMe. Some of you are focused on tracking how you’re doing over time. Many want to make sure the next person diagnosed can learn from your experience. All are contributing to the greater good, because what you share helps researchers see what patients really need.

During #24DaysofGiving, we’re highlighting some of the most important things we’ve learned from data that members like you have selflessly shared, and all the good your data donations are doing.

Every year, the Food and Drug Administration (FDA) approves new medications that can help people living with life-changing conditions. But with new treatments come new questions. And that’s exactly what happened at the end of 2014 for people living with idiopathic pulmonary fibrosis (IPF).

IPF is a rare condition that causes scarring in deep lung tissue over time and has no cause or cure, and before October 2014 no available treatment. That’s when two FDA-approved medications for the condition became available, simultaneously. They had the potential to make a difference in the lives of IPF patients, but how could they learn which medication might be right for them? If they started taking one of the new treatments, would they experience the side effects that were reported by the FDA? Would the side effects go away, or get better? In short: were the drugs worth taking?

We set out on a journey with members of the PatientsLikeMe IPF community to get answers from the best source possible—other patients who had already started to take the treatments. We worked together to understand their complete experience, everything from how they learned about the new treatments and if they were hard to access, to their side effects and what might cause them to switch treatments. The data that the community shared (all of it) is helping other members better understand what could work for them.

Here’s just some of what we discovered, and what others are learning, thanks to the data that members donated:

About making choices and getting access
Physician buy-in matters. In fact, physicians were active participants in 60-70% of the treatment decisions IPF patients made. But once they made a choice to begin treatment, patients were challenged to work around obstacles that prevented them from getting access to the treatment, things like how to get reimbursed and even where to fill the prescription.

About the side effects vs. the clinical trial
The overall side effects when first starting the medication were similar. Most patients, between 69-72%, reported ‘none’ or ‘mild’ side effects for one or other treatment. Patients also reported some side effects more often than those patients who were in the clinical trials. For one medication, patients reported higher rates of decreased appetite compared to the clinical trial participants (27% vs. 8%) and sensitivity to sunlight (18% v. 9%).  For the other treatment, patients reported a higher rate of decreased appetite (19% v. 11%) compared to the clinical trial participants.

Switching it up
Most patients, between 55-57%, aren’t sure if they are satisfied with their treatment, but only a small percentage, between 8-10%, report that they are likely to stop taking the medications

There is a lot more to learn here:

We’ll all continue to learn in real time as more and more IPF members share their experiences with the treatments, but the IPF example underscores why giving your data matters so much—to you, to others, and to research. We’re truly better together.

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Still leading a full life – An interview with IPF member David

Posted November 27th, 2015 by

David’s (darbygreenboy) username comes from the village in the English countryside where he lives and is still an active member of the community. We caught up with this grandfather of 10 – a former business owner, mayor and leader of the town council to talk about living with IPF. Here’s what we learned …

David surrounded by his family one Father’s Day.

Tell us a little bit about yourself. What are some of your hobbies and passions?

I am 70 years young and live in England in a village called Darby Green in the Parish of Yateley. It is in the countryside, but only 30 miles from London. I live there with my wife of 48 years, Rose, whom I met 51 years ago at Youth Club and we have been together ever since. We have 3 children: Abbie, Emma and Stephen, and 10 grandchildren aged from 3 months to 13 years old and they all live nearby.

I had my own business for 30 years, but I am now retired. I am a Yateley town councillor and have been for the last 12 years. I was also mayor of my town some 8-9 years ago and leader of the council for 7 years.

I love travelling and before being diagnosed with IPF, we traveled many times to the USA, including touring the Deep South, California, Alaska, New York and many other wonderful places. Now, unfortunately, we can no longer obtain reasonable priced medical insurance to travel to the U.S.

I love to watch football (soccer) and was a keen tennis player until the IPF.

You say in your PatientsLikeMe profile that you were diagnosed with IPF after getting out of breath climbing stairs. What were your thoughts and feelings when you received this diagnosis?

My first thoughts after being diagnosed with IPF was one of stunned realization of my own mortality. I had read on the Internet that the median life expectation was 2-3 years, that was 3 years ago. The first year after being diagnosed I caught a cold that went to my chest. This developed into a type of pneumonia and I was very ill and it took me nearly 3 months to feel near normal again.

What are some changes that happened in your life after being diagnosed? What in your life helps you to better manage your condition?

This made me realize I had to make changes and try to avoid infections. I no longer went to watch winter soccer matches.When the grandchildren have colds they do not visit. If I am at a council meeting and a councillor has a cold they tell me and we avoid contact.

I know it sound severe but it has kept me free from colds for 18 months now. I carry in my travel case a 2-week supply of antibiotics as well as prednisone prescribed by my doctor in case I get a chest infection whilst on holiday.

All that said, I lead a fairly full life. I help with picking up the grandchildren from school and they visit every week. I am okay at walking reasonable distances on the flat, but can no longer run about with the children or play tennis.

Can you describe your experience on PatientsLikeMe? What keeps you coming back to the site?

I find PatientsLikeMe essential and in many ways reassuring. If I am feeling down after getting bad side effects from either drugs or IPF itself, I will go on line to see what others have experienced. And this I find, in a strange way, comforting to know I am not alone. 🙂

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September is Global Pulmonary Fibrosis Awareness Month

Posted September 28th, 2015 by

If you hadn’t already heard about September being named Global Pulmonary Fibrosis Awareness Month by The Pulmonary Fibrosis Foundation (PFF), there are still two days for you to join in and help spread the word.

What does “global awareness” mean?

Pretty much just what it sounds like. It’s spreading awareness so that everyone around the world knows what PF is. If you’re living with it, you won’t have to explain it to those around you anymore. If you’re not, you’ll have an idea of what those with PF are going through.  And it means that we all make a unified commitment to improve the lives of patients through resources, research, and the development of new treatments.

How can you help?

Global also means everyone. Including you.

There are many ways you can get involved in raising awareness among family, friends, healthcare professionals, colleagues, neighbors, leaders in your community and anyone else in your life through the end of the month. (Hint: You can start by sharing this blog!)

You can “Blue-It-Up” if you want. For this social media challenge, draw attention to PF by putting blue in your hair, wrapping blue ribbon around your trees or visiting a spa for a blue mani-pedi with some friends and then sharing your pictures online with #BlueUp4PF.

Feel free to post your #BlueUp4PF pictures and share your own experiences within the PatientsLikeMe community. We’ll post some of the responses on our Facebook and Twitter to raise awareness.

For more information and ideas on how to participate, visit www.globalpfawareness.org. Thanks for sharing!

Let’s raise awareness, together.

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Food for Thought: July (chocolate) edition, take 2

Posted July 7th, 2015 by

Last year, July’s Food for Thought revolved around MS members sharing their experiences with chocolate. This year, we thought we’d continue the tradition – check out what a few members had to say about their relationships with the delicious sweet:

“I have been trying a dairy free diet for a couple of months due to me having a problem with milk protein which is an antigen to the lungs and acts like any other substance that can affect our breathing. I have a treat of dark chocolate now and again and have been grateful for a plentiful supply of dairy free products.”
-IPF member

“For me, I don’t deny myself a little sweet treat.  What I do deny myself is massive amounts of sweet treats. I buy a few high quality dark chocolates and allow myself one per day. Or I buy the sugar free mousse packs in the refrigerator section or the sugar free Jell-O puddings. They seem to work. I also make my own brownies and cookies using high fiber ingredients and sugar substitutes. I have been using Xylitol with good success too.”
-Diabetes member

“I will take a teaspoon or two of coconut oil (organic, extra virgin) and add to it a bit of cocoa powder and a drop or two of Stevia to sweeten.  It tastes like real chocolate. The coconut oil is firm and melts in your mouth just like real chocolate…I can hardly tell the difference.”
-Diabetes member

If you missed our other Food for Thought posts, read the previous editions here.

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PatientsLikeMe members to be highlighted in patient empowerment webinar

Posted January 13th, 2015 by

Many PatientsLikeMe members talk openly about the reasons why they donate their health data and why they believe patient-centered healthcare means better healthcare for all. And just a week from now, two of them will be sharing their stories with everyone in a live webinar.

On Tuesday, January 20th, at 2:00pm EST, the Partnership to Improve Patient Care (PIPC) is hosting their first “Patient Empowerment Webinar,” an online event focusing on the importance of patient engagement in their own healthcare and in health policy. Two PatientsLikeMe members, Ms. Laura Roix and Ms. Letitia Brown-James, will be participating in the discussion, and their experiences will be a part of the webinar. Here’s a little bit about Laura and Letitia, and more ways they’re already empowering others:

Laura is a member of the idiopathic pulmonary fibrosis (IPF) community on PatientsLikeMe, and she recently traveled to Maryland to speak at the Food and Drug Administration’s (FDA) Patient-Focused Drug Development Public Meeting on IPF.  Laura went with our very own Sally Okun RN, VP of Advocacy, Policy and Patient Safety and spoke about her journey and what it’s like to live with IPF. (She recapped her experiences in an October blog interview.) But that’s not all Laura shares – she’s a 3-star member on PatientsLikeMe, which means she is a super health data donor and always keeps her information up to date so others can learn from her.

Letitia has been living with epilepsy since she was little, but after connecting with the PatientsLikeMe epilepsy community she learned about new treatment options available to her, like surgery. She shared about her experiences in a video, and after receiving her surgery, she’s been living seizure-free for years. Letitia is also a part of the first-ever PatientsLikeMe Team of Advisors, a patient-only panel that gives feedback on research initiatives and creates new standards to help all researchers understand how to better engage patients.

The PIPC webinar is open to everyone, so if you’d like to join, please RSVP to the event coordinator via email. Hope to see you there!

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“I continue to be inspired by those who share this fight with me” – PatientsLikeMe member Doug shares his journey with HP

Posted January 9th, 2015 by

Meet Doug. He’s part of the pulmonary fibrosis (PF) community on PatientsLikeMe and is living with a condition specifically known as chronic hypersensitivity pneumonitis (HP). It’s similar to other types of PF, but also has its differences. We caught up with Doug for an interview to help spread the knowledge about these two conditions, but learned so much more. He shared what it’s like to live with HP, how he uses PatientsLikeMe to learn more about his own health and how the community has helped him to stay inspired in his fight.

Can you share a bit about your chronic HP? Can you explain to our blog followers how it’s different than IPF?

I believe the major difference is that with hypersensitivity pneumonitis there is a cause. If I’m correct there are three forms: acute, subacute and chronic. All are caused by exposure to an antigen that may or may not be identified. In my case, I have chronic hypersensitivity pneumonitis (HP). My specialists have determined that it’s not necessary to identify the antigen since my condition is chronic and cannot be reversed.1

What was your diagnosis process like, and how was it different than what you’ve heard about getting diagnosed with IPF?

Of course I can’t compare how it ”feels” to have HP vs. IPF, and I’m no expert, but I will give you my version of the difference between HP and IPF. First, both are forms of pulmonary fibrosis. With HP, the fibrosis forms primarily higher up in the lungs, and IPF forms in the lower part of the lungs. Air trapping occurs in cHP but not in IPF. I have no idea how this impacts me as a patient, but I’ve included a comparison from Dr. Jeff Swigris.

Apparently another difference is that HP fibrosis is caused by inflammation, whereas IPF is caused by different forms of pro-fibrotic influences. Generally speaking, specialists recommend an anti-inflammatory drug (prednisone) and/or an immunosuppressive such as azathioprine, mycophenolate, cyclosporine, or cyclophosophamide. In my case, my doctor and I agreed on a course of mycophenolate. Initially, it had significant side effects, such as severe fatigue, poor sleep, weight gain and depression. I switched to Myfortic, which is a different brand of mycophenolate, and now the side effects are minimal. I have much more drive and I feel much better! It’s still too early to tell if it will help. My concern is that my pulmonary function test (PFT) results have dropped in the last four months, so I’m concerned that I’m deteriorating. At the moment, I function almost normally. I have a walking routine that includes a 7.5 K walk, which I can complete in an hour. I now require supplemental oxygen for long flights, but I still consider myself lucky!2

You frequently use the InstantMe and Quality of Life tools on PatientsLikeMe – why do you like to use these to donate your data?

I find it’s good to have a record of your health pattern. This can include how you feel daily as well as a record of the medications I’m on. I print out portions of this for my doctors’ appointments and it helps me be well prepared.

How have others in the HP and IPF communities on PatientsLikeMe helped support you on your journey?

My biggest concern is that HP is the “poor cousin” in the PF family! There are very few of us online and therefore it’s difficult to learn as much as I’d like to! Nevertheless, I have learned a lot about shared aspects of PF such as patient care, oxygen therapy and lifestyle issues. I continue to be inspired by those who share this fight with me and I’m always grateful when I’m able to learn something that will help me.

I’ve always told my wife I plan to die of old age! One of my strengths is that I have a great attitude. Participating in platforms like PatientsLikeMe helps me not only learn more, but it fortifies my attitude!

Many people may not know about rare conditions like HP and IPF. If there was one thing you thought someone who doesn’t have a clue should know about HP, what would it be?

That’s a tough question because there is so much more I need to learn before I feel I can address this question. I suppose the key with HP is that if you have developed acute or subacute forms of the disease you may be able to arrest the fibrosis before it progresses too far.

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1 http://nationaljewish.org/Participation-Program-for-Pulmonary-Fibrosis/Community/Blog/Participation-Program-for-Pulmonary-Fibrosis/November-2013/What-is-Chronic-Hypersensitivity-Pneumonitis

2 http://nationaljewish.org/Participation-Program-for-Pulmonary-Fibrosis/Community/Blog/Participation-Program-for-Pulmonary-Fibrosis/November-2013/Some-of-the-nuance-about-cHP


2014 recap – a year of sharing in the PatientsLikeMe community

Posted December 23rd, 2014 by

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys in short videos and even posted about their favorite food recipes.

A heartfelt thanks to everyone who shared their experiences this year – the PatientsLikeMe community is continuing to change healthcare for good, and together, we can help each other live better as we move into 2015.

Team of Advisors
In September, we announced the first-ever PatientsLikeMe Team of Advisors, a group of 14 members that will work with us this year on research-related initiatives. They’ve been giving regular feedback about how PatientsLikeMe research can be even more helpful, including creating a “guide” that highlights new standards for researchers to better engage with patients. We introduced everyone to three so far, and look forward to highlighting the rest of team in 2015.

  • Meet Becky – Becky is a former family nurse practitioner, and she’s a medically retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer.
  • Meet Lisa – Lisa was diagnosed with Parkinson’s disease (PD) in 2008, and just recently stopped working as a full-time executive due to non-motor PD symptoms like loss of function, mental fatigue and daytime insomnolence. Her daughter was just married in June.
  • Meet Dana – Dana is a poet and screenplay writer living in New Jersey and a very active member of the mental health and behavior forum. She’s living with bipolar II, and she’s very passionate about fighting the stigma of mental illness.

The Patient Voice
Five members shared about their health journeys in short video vignettes.

  • Garth – After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school.
  • Letitia – has been experiencing seizures since she was ten years old, and she turned to others living with epilepsy on PatientsLikeMe.
  • Bryan – Bryan passed away earlier in 2014, but his memory lives on through the data he shared about idiopathic pulmonary fibrosis. He was also an inaugural member of the Team of Advisors.
  • Becca – Becca shared her experiences with fibromyalgia and how she appreciates her support on PatientsLikeMe.
  • Ed – Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort.

Patient interviews
More than 30 members living with 9 different conditions shared their stories in blog interviews.

Members living with PTSD:

  • David Jurado spoke in a Veteran’s podcast about returning home and life after serving
  • Lucas shared about recurring nightmares, insomnia and quitting alcohol
  • Jess talked about living with TBI and her invisible symptoms
  • Jennifer shared about coping with triggers and leaning on her PatientsLikeMe community

Member living with Bipolar:

  • Eleanor wrote a three-part series about her life with Bipolar II – part 1, part 2, part 3

Members living with MS:

  • Fred takes you on a visual journey through his daily life with MS
  • Anna shared about the benefits of a motorized scooter, and a personal poem
  • Ajcoia, Special1, and CKBeagle shared how they raise awareness through PatientsLikeMeInMotion™
  • Nola and Gary spoke in a Podcast on how a PatientsLikeMe connection led to a new bathroom
  • Tam takes you into a day with the private, invisible pain of MS
  • Debbie shared what it’s like to be a mom and blogger living with MS
  • Shep spoke about keeping his sense of humor through his journey with MS
  • Kim shared about her fundraising efforts through PatientsLikeMeInMotion™
  • Jazz1982 shared how she eliminates the stigma surrounding MS
  • Starla talked about MS awareness and the simple pleasure of riding a motorcycle

Members living with Idiopathic pulmonary fibrosis:

Members living with Parkinson’s disease:

  • Dropsies shared about her frustrating Parkinson’s diagnosis experience and how diabetes might impact her future eating habits

Members living with ALS:

  • Steve shared the story behind his film, “My Motor Neuron Disease Made Easier”
  • Steven shared how technology allows him to participate in many events
  • Steve shared about creating the Steve Saling ALS residence and dealing with paramedics
  • Steve told why he participated in the Ice Bucket Challenge
  • Dee revealed her tough decision to insert a feeding tube
  • John shared about his cross-country road trip with his dog, Molly

Members living with lung cancer:

  • Vickie shared about her reaction to getting diagnosed, the anxiety-filled months leading up to surgery and what recovery was like post-operation
  • Phil shared the reaction she had after her blunt diagnosis, her treatment options and her son’s new tattoo

Members living with multiple myeloma:

  • AbeSapien shared about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding

Caregiver for a son living with AKU:

  • Alycia and Nate shared Alycia’s role and philosophy as caregiver to young Nate, who is living with AKU

Food for Thought
Many members shared their recipes and diet-related advice on the forums in 2014.

  • April – first edition, and what you’re making for dinner
  • May – nutrition questions and the primal blueprint
  • June – getting sleepy after steak and managing diet
  • July – chocolate edition
  • August – losing weight and subbing carbs
  • September – fall weather and autumn recipes
  • Dropsies – shared her special diabetes recipes for Diabetes Awareness Month

Patients as Partners
More than 6,000 members answered questions about their health and gave feedback on the PatientsLikeMe Open Research Exchange (ORE) platform. ORE gives patients the chance to not only check an answer box, but also share their opinion about each question in a researcher’s health measure. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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“We are many” – PatientsLikeMe member Laura reports back on her experiences as a panelist at the FDA Patient-Focused Drug Development Public Meeting on IPF

Posted October 17th, 2014 by

Just yesterday, you saw our very own Sally Okun RN, Vice President of Advocacy, Policy and Patient Safety, reported back about her experiences at the FDA Patient-Focused Drug Development Public Meeting on IPF. And today, we wanted to share the patient experience. For each public meeting, the FDA invites patients and caregivers to apply to be a panelist and share their real-world experiences with the disease – and Laura (LaurCT) was selected to attend! So, along with Sally, Laura headed to Silver Springs, Maryland and spoke to the FDA about what life if really like living with IPF. Check out how it all went below.

Laura was officially diagnosed with idiopathic pulmonary fibrosis (IPF) in May 2013, but was living with symptoms for years before that. She’s really an inspirational member of the community and always has her 3-stars (which means Laura is a super health data donor!).

Why did you want to be part of the FDA public meeting?

It was simple for me, I wanted to be part of the solution. When I was diagnosed with IPF I was quite the mess as many of us are. I’m a fighter. I just can’t sit back and do nothing. So, once I got over the total devastation I wanted to fight for me, for others and especially for my children. We all have our strengths and fundraising is not one of mine. I can stand up and tell how hard it is to live with this disease, not just medically, but the changes and decisions we all have to make that seem small to some but are huge to people who are living with this disease. It was important for me to be able to give back in some way to those that helped me through all this.

What did it mean to be accepted?

When I filled out the summary I felt no way will I be accepted so I’m not going to worry about it. When I received that email from the FDA that said, “We would like to extend an invitation to you to present your comments during the panel discussion on Topic 1,” I had to read it twice. My next reaction was of total humility, to represent so many patients on a panel and to tell people what we all face was such an honor. My next reaction was to share the good news with Sarah on PatientsLikeMe because I knew she’d be just as excited for me.

What was it like being there as a patient representative speaking at the FDA event? Did you feel like your voice was heard?

It was amazing! I wasn’t alone – there were 8 panelists who have been affected by this awful disease and 4 of us were IPF Patients. As panelists were speaking on their experiences, I would look at the FDA representatives and I could see that they were moved. That is what we went there to do and I truly believe we accomplished that.

What did you learn when you were there?

As many of us have had to do, I have had major changes this last year. Changes that really impacted me. After our panel was done there was a break and people were coming up to me and talking to me about their own experience or thanking me.  It was an unbelievable experience. I learned that I still could contribute in some way. It is good to know what we were doing was important. It gave me a bit of that feeling of accomplishment and purpose that I’ve been missing lately.

How do you feel about your pursuits as an advocate for IPF after having this experience under your belt?

I’m still whirling from the experience. I would love being an advocate for IPF, getting the word out is so important. I was just at the COE I go to for the clinical trial I’m in and I was telling them about my experience and showing them the pictures. There are opportunities to be interviewed by some doctors and the center said they would give out my name when the opportunity arises.

When I completed the summary for the FDA I thought ‘I can really do this!’ So, when I was asked to participate in an afternoon education session for 2nd year medical students at UCONN School of Medicine I said yes. The discussion will be on the impact of chronic diseases on patients and family. You can bet I will tell them the disease that I have. It’s exciting to get that word out so when they become practicing medical professionals and they hear idiopathic pulmonary fibrosis or pulmonary fibrosis, they will hopefully remember what it is.

I just want to add the biggest thing the experience gave me. The in person support groups are few for IPF. In my area there is only 1 and it’s quarterly. The virtual support groups like PatientsLikeMe have been a life changing experience. Many of us feel compassion for each other and cry when they cry and laugh when they laugh and praise those who have accomplished milestones like increase in PFTs or Pulmonary Rehab. It was these virtual groups that got me to a COE and on my journey to living with IPF and not dying with IPF. It still brings me to tears remembering looking out into the audience and seeing over 100 IPF patients some that I have spoken to online and seeing them in person literally takes my breath away to know I really am not alone and that we are many. I got to talk to them in person.

The pictures – UGH! I hate my steroid looks but as Diane, another patient said, this is our new normal. So the selfies are there! Sally taking a picture of me at the FDA podium ~ we got to sit when we spoke with Dr. Lederer from NY Presbyterian Transplant Team, with Diane another IPF panelist and with Sally from PatientsLikeMe

PatientsLikeMe helps so many diseases online and we can think of it as just another online place and not realize there are people behind the scenes that really care for us. Meeting Sally from PatientsLikeMe and seeing her stand up and speak with such compassion about IPF puts a face to such a wonderful organization. I want to thank you for giving me the opportunity; you can’t imagine in a million years what it meant to me. I will be forever grateful.

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Sally Okun reports back from the FDA Patient-Focused Drug Development Public Meeting on IPF

Posted October 16th, 2014 by

On September 26th I was at the FDA for the Patient-Focused Drug Development Public Meeting on IPF. This is one of 20 meetings that the FDA is holding to learn directly from patients and their caregivers about daily life with the specific condition’s symptoms and treatments. (You can learn more about these meetings here.) I have attended a number of these meetings and often have meaningful data to share from our own PatientsLikeMe members. So far, however, the FDA has only allowed patients and caregivers to present and participate as panelists.

So to get as much of our members’ real-world health data in front of the FDA as possible, I take full advantage of the public comment period at the end of each meeting. It’s a short 3-5 minutes of time, but it’s a chance to share insights from PatientsLikeMe members and to reflect on some of what’s been discussed during the public meeting. In addition, we submit a full report to the FDA’s public docket that is open for comment two full months following the meeting. The report includes a community profile and the results of any polls PatientsLikeMe members have taken part in prior to the meeting.

This meeting was different
It was my pleasure and privilege to meet and spend time with a member of our PatientsLikeMe community who was selected by the FDA to be one of the panelists. LaurCT did an amazing job sharing her challenge in getting an accurate diagnosis – which took a number of years. She also shared with the FDA and all the folks in the room that she did not learn about the Center of Excellence for IPF located only an hour from her home from her now former pulmonologist after finally getting the diagnosis of IPF – she learned about it from other IPF patients on PatientsLikeMe. (Thank you for sharing Laura!)

Many in the room acknowledged that a cure may not be found in their lifetime but they also conveyed to the FDA a palpable sense of urgency for treatments to slow the progression of the disease to reduce their symptom burden and increase their ability to participate more fully in life. What was startling was how often people shared how the lack of knowledge about IPF among physicians – even among pulmonary specialists – led to delays in their diagnosis and for some resulted in misdiagnosis and inappropriate treatment.

One specialist, Dr. David Lederer, co-director of the interstitial lung disease program at Columbia University Medical Center in New York City and well known to many patients in the room for his work in IPF, used his few minutes in the public comment period to call for therapies that help his patients “live longer, healthier, more normal and independent lives.” He provocatively said that “oxygen should be free” and called for more study of the benefits of oxygen combined with exercise which today are the only things that help people with IPF actually feel better. This was borne out in our poll as well.

A family thing
In addition, there is an important familial connection that many feel is not getting sufficient attention in research. One woman shared her family’s story starting with her father’s diagnosis and death followed by the deaths of each of his 4 brothers of the same disease. A number of people talked about family members who died over the years with similar respiratory symptoms and questioned whether they in fact may have died of undiagnosed IPF.

Your voices transformed
While the opportunity for patients to be heard cannot be diminished, I along with others in policy and advocacy circles remain concerned by the anecdotal nature of these FDA proceedings. At each meeting, there are a few polling questions with audience clicker devices, but there is no systematic way of transforming the very powerful patient narratives that are shared into meaningful and usable data. At PatientsLikeMe, your stories and your voices are best amplified and speak most loudly when transformed into data that is both meaningful and measureable.

All that said, it’s worth watching the free webcasts of the meeting, which you can find here.

PatientsLikeMe member SallyOkun

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