28 posts tagged “Idiopathic pulmonary fibrosis”

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


Meet Laura from the PatientsLikeMe Team of Advisors

Posted March 16th, 2016 by

 

We’d like to introduce you to Laura, another member of your 2015-2016 Team of Advisors. When Laura was diagnosed in 2013, she’d never heard of Idiopathic Pulmonary Fibrosis (IPF). Flash forward three years, and she’s made patient education and advocacy her main focus.

Laura has spoken before the FDA, regularly blogs about IPF on various social platforms and recently started a support group at a local pulmonary rehab center. When we caught up with her, she told us: “I never thought this would be my path but it has been very rewarding.”

Below, Laura opens up about the loneliness of living with a chronic illness and how important it’s been for her to connect with other patients who know what she’s going through.

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

My grandbabies, both children and animals. Both have no expectations of my limits and love me unconditionally. No matter what they do they make me happy. Soon I will be a great-grandmother and the joy of knowing I’ve lived to see it is a blessing.

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

I try to keep it very simple for those that do not understand IPF. I tell them I have Idiopathic Pulmonary Fibrosis which is scarring of the lung…that my lungs will fill up with scars and there is no cure and currently the only treatment is one of two pills that may slow the progression or a lung transplant. Anything more than that and you lose their interest. If they ask for more information I give it, otherwise I don’t.

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

To take a deep breath and learn everything they can so they can empower themselves.

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

Very important! I have a chronic, fatal terminal illness. It’s a very lonely place to be. The only one that understands the shift in moods is someone who is where I am.

 

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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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PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships

Posted October 19th, 2015 by

Cambridge, MA, October 19, 2015—PatientsLikeMe has named 14 members to its patient-only 20152016 Team of Advisors and challenged them to work through an issue that’s central to everyone in the healthcare system: how to redefine patient partnerships. The team will be focused on rethinking what it means for patients to be partners, and on establishing new ways for the healthcare industry to connect with patients to deliver better care.

PatientsLikeMe CEO Martin Coulter said that in an era when patients must be front and center in healthcare discovery and development, the group’s mission is vital to every patient, pharmaceutical company, regulator, payor and provider. “This advisory team includes some of the strongest patient advocates we have ever met. Their experience can empower other patients, and help those serving patients understand what it means to be a good partner. The team’s work will help create a stronger foundation for a more equal and participatory system of care.

More than 1,400 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. The nearly equal mix of men and women are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), bipolar II, cancer, Type 1 diabetes, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lupus, major depressive disorder (MDD), multiple sclerosis, Parkinson’s disease and post traumatic stress (PTS). Members named to the team include: Christel Aprigliano, Craig Braquet, Jeff Demers, Cyrena Gawuga, David Gewirtz, Phyllis Marchand, John Michael, Gus Prieto, Laura Roix, Patti Sanner, Allison Silensky, Angela Stogner, Doug Thornburg and Peggy Zuckerman.

Christel Aprigliano is living with Type 1 diabetes and believes that the key to a good partnership is a focused, data-driven discussion on what matters most to patients. “Patient reported outcomes are crucial to the healthcare conversation. The more information we can share about what life is like for patients every day, the more questions we can ask each other, and the better we can help patients live well with the disease they have.”

The 2015-2016 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times in the coming months. This is the second Team of Advisors the company has formed. Last year, the inaugural group provided feedback to the research team and published a best practices guide that outlines new standards for how researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) 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 350,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


Day-by-day, hand-in-hand

Posted February 28th, 2015 by


All around the world, everyone impacted by a rare disease is taking everything day-by-day. But they can take each day hand-in-hand with the help and support of others. Today, on Rare Disease Day (RDD), EURORDIS (Rare Diseases Europe) and its global partners are calling on everyone to lend a hand to anyone affected by a rare disease.

RDD’s international theme is “Living with a rare disease” because every patient’s story and needs are different, and only by sharing our experiences and raising awareness can we all hope to improve the lives of those living with a rare disease. It’s also about the million of parents, siblings, grandparents, aunts, uncles, cousins and friends that are impacted and who are living day-by-day, hand-in-hand with rare disease patients.1

Check out the official video below:

According to the Global Genes Project, there are 350 million people living with a rare disease around the globe. Just how many is that? If you gathered those people into one country, it would be the third most-populous country in the world. There are more than 7,000 identified rare diseases, from skin conditions to progressive neurological disorders, and more are being discovered every day.2 Here’s how you can get involved in spreading the word:

Rare diseases have a personal connection with PatientsLikeMe – our co-founders’ brother, Stephen, was diagnosed with ALS in 1998, and their family’s experiences with the condition led to the beginning of PatientsLikeMe. In 2012, we partnered with the Global Genes Project to create the RARE Open Registry Project to help those diagnosed find others like them in one of the over 400 rare disease communities on the site, and launched the first open registry for people with alkaptonuria (AKU) with the AKU Society in early 2013. We also accelerated our focus on enhancing the idiopathic pulmonary fibrosis (IPF) community through a collaboration with Boehringer Ingelheim. And now, the IPF community on PatientsLikeMe is the largest open registry with more than 3,700 members …and counting.

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1 http://www.rarediseaseday.org/article/theme-of-the-year-living-with-a-rare-disease

2 http://globalgenes.org/rare-diseases-facts-statistics/


Let the world know about pulmonary fibrosis

Posted September 7th, 2014 by

On Rare Disease Day back in February 2013, we announced our partnership with Boehringer Ingelheim to help enhance the online idiopathic pulmonary fibrosis (IPF) community. And by September 7th that same year, the community had grown to just over 1,000 people. Today, on the next edition of Global Pulmonary Fibrosis Awareness Day, the community stands 2,500+ members strong, making it the largest online gathering of IPF patients anywhere in the world. In just a year, the community has almost tripled in size, and everyone is sharing about their experiences so that other patients, doctors and researchers can learn more about life with IPF.

But what exactly is IPF? Pulmonary fibrosis (PF) is a medical condition that causes lung tissue to thicken, stiffen and scar over a period of time, and “idiopathic” means “no known cause.” According to the Coalition for Pulmonary Fibrosis, there are over 100,000 Americans living with IPF at any given time, and an estimated 40,000 will die from the condition every year. And besides a complete lung transplant, there is no known cure for IPF.1

Today, the Pulmonary Fibrosis Foundation (PFF) is encouraging everyone to educate, share, fundraise and start conversations about IPF. You can learn more about how to get involved through the PFF’s toolkit and guidelines for September.  And if you or someone you know has been diagnosed with IPF, join the community at PatientsLikeMe – let’s change who knows about this condition and promote a better understanding of IPF all year round.

Share this post on twitter and help spread the word for pulmonary fibrosis awareness.


1 http://www.coalitionforpf.org/facts-about-idiopathic-pulmonary-fibrosis/


The Patient Voice- PF member Bryan shares his story

Posted July 10th, 2014 by

 

Since we announced #dataforgood back in March, many PatientsLikeMe members have been sharing about why they donate their own health experiences. Becca (fibromyalgia) and Ed (Parkinson’s) already shared their stories, and now we’re hearing from Bryan, an idiopathic pulmonary fibrosis (IPF) member. Check out his video above. Miss Becca or Ed’s? Watch them here.

Share this post on twitter and help spread #dataforgood.


Food for thought: May edition

Posted May 30th, 2014 by

Just last month, we shared about some of our community members’ favorite foods, and about how what they choose to eat can impact the conditions they live with every day. We heard from the fibromyalgia, type 2 diabetes and multiple sclerosis communities – and to keep the series going, we’ve got three new hot, or cold if you like a good scoop of ice cream, forum threads to share. (If you follow our blog, that hot/cold play just made you smile… again. ☺)

ALS forum thread: tips on how to gain weight while eating healthy?

“… the bottom line is that I need to put on weight. I eat organic foods when possible, no sugar and a little if any wheat.”

“I rely on high calorie fruit (but all are good) such as bananas, mangoes, blueberries, etc. I just blend them up (using one fruit) to make smoothies.” 

“You might try using Ensure, Boost or other nutritional food extras.” 

Idiopathic pulmonary fibrosis forum thread: Primal blueprint

“The basic premise is that we should be eating like our pre-agricultural ancestors and eliminate grains and sugars from our diet. I need to lose weight to get on the transplant list…”

“And it becomes very surprising to find out how wheat is found in many unexpected products.”

“Men do demonstrate the ability to lose weight quicker and faster than women … although I prefer the word ‘program’ to ‘diet’” 

PatientsLikeMe forum thread: Nutrition questions anyone?

“Someone mentioned to me, and I am wondering if it is a concern to others, that the skin of fruit nowadays might have too many toxins from sprays, etc. … do others that eat non-organic worry about that?” 

“Juicing is a wonderful way to gulp down the 10-20 servings of raw fruits and vegetables that many are encouraged to intake.

“My intestines are very sensitive to fibre, I would have to build up the fibre content very slowly, or they would go straight through me …”

Jump into one of these forum threads or you can always start your own with a favorite recipe, general diet tips that have worked for you or a question you think the community can help answer.


“Gee, doc, ya think?” – Barbara speaks about her diagnosis and life with IPF

Posted May 19th, 2014 by

PatientsLikeMe member Barbara (CatLady51) recently shared about her journey with idiopathic pulmonary fibrosis (IPF) in an interview with us, and she spoke about everything from the importance of taking ownership of managing her condition to how she hopes to “turn on the light bulb” by donating her personal health data. Read her full interview about living with IPF below.

Some PF members report having difficulty finding a diagnosis – was this the case with you? What was your experience like? 

My journey started back in 2005, when after my first chest cold that winter, I was left with severe coughing spells and shortness of breath. An earlier chest x-ray didn’t indicate any issues, so I was referred to a local community-based respirologist (what we call a pulmonologist here in Canada) who wasn’t concerned with my PFT results. I also had a complete cardiovascular workup, again with no alarming results.

Then, in 2008, I had another chest cold. Growing up in a family of smokers and being the only non-smoker, I seemed to have managed to miss having chest colds, but 2005 and 2008 were definite exceptions. Again, a normal x-ray, another visit to the respirologist and another PFT that didn’t send up any alarms [although looking back at both 2005 and 2008, I can see where there was a definite indication that I was heading towards restrictive breathing problems]. Inhalers only made the coughing worse. The respirologist said I had “sensitive lungs” – gee, doc you think?

Then, in November 2010, I was laid out with another chest cold, coughing my lungs inside out, barely able to walk 10 feet. So the new family doctor calls me. This time, the x-ray report came back that I was showing signs of interstitial lung disease (ILD). What? So onto the computer and in to see the family doctor. When the doctor suggested sending me back to the local community-based respirologist I had previously seen, I said NO BLOODY WAY!

Instead, through a friend who is a thoracic surgeon at the University Health Network (UHN) in Toronto, I got a quick appointment at the ILD Clinic at Toronto General Hospital (TGH) in January 2011. Since I hadn’t yet had a HRCT, I was sent for one and returned to the clinic in June. The initial diagnosis was probably IPF, but maybe NSIP since my HRCT didn’t show the UIP-pattern. The decision was made to treat as IPF so no harmful treatment was undertaken. A biopsy was discussed, but was considered too early for that invasive test and that instead my disease would be monitored via non-invasive tests.

My ILD/PF specialist continued to monitor me and after another exacerbation early in 2012 and the PFT showing a progression of my lung disease, we decided to send me for a VATS biopsy. The September 2012 biopsy clearly indicated the UIP-pattern of lung damage and the IPF diagnosis was confirmed.

Over the last few years, I’ve learned a great deal. I know that the road to diagnosis is often long and complex with not all the pieces of information presenting at the same time — seldom with one test or series of tests taken at one point in time. I feel I’m fortunate that first I had that very unsatisfactory experience with the local community-based respirologist and that through my husband’s work we had met and become friends with a thoracic surgeon who is on the lung transplant team at TGH.

So even though I “naturally” followed the recommended course of action to get myself to an ILD/PF expert, my path to diagnosis wasn’t instantaneous. My biopsy could have just as easily shown that I had a treatable form of PF — still not good news but a different path.

Now with a confirmed IPF diagnosis, I’ve been assessed for transplant (June 2013) and found suitable but too early. But another winter of exacerbations and my ILD/PF specialist is now talking about going on the waiting list.

Another PF member, Lori, spoke about her “new normal” – how did your diagnosis change daily life?

Yes, life with PF has certainly been a series of adjusting to the “new normal” but up until February 2013 when I started oxygen therapy, the changes were small. I had to explain to people why I broke into coughing fits while talking on the phone or in person. I had to explain to people who offered water that thank you but it didn’t help since it was just my lungs telling me to talk slower or shut up. I had to explain to people that I wasn’t contagious when coughing. I had to explain to people that the huffing and puffing were just the “new me” and that they didn’t need to feel they had to jump in — that I would ask when I needed help.

But since going on oxygen therapy with my new facial jewelry and my constant buddy, I don’t have to explain that I have a disease but some people still like to ask questions and I enjoy answering them.

Life with PF and supplemental oxygen is definitely more complicated. I started with high-flow for exertion (6 lpm) and liquid oxygen (LOX). So I can’t spontaneously take off overnight (I would have to make arrangements about a week ahead to have  equipment and supplies delivered at my destination) and I probably can’t fly. But I’m a homebody so that has affected me very little. But I can’t leave the house without considering how long I will be and how many of my LOX portables to take with me.

I still do my own driving, shopping, cooking, housework, and one or two 2-mile walks per day on the farm property — over hilly landscape — because I’m de-conditioned after this past winter. I’m currently having to use 8-10 lpm for those walks but I’m doing them. Use it or lose it!

What made you decide to get so involved in the PatientsLikeMe community and how has it helped you better understand your own PF?

Involvement with PatientsLikeMe was more of a knowledge-based decision. I believe that knowledge is power and knowing as much as I can about my disease helps me to manage the disease. For me, support is sharing what I have found and providing directions to that information for others. Then it is up to them to read the information and decide how, or if, it applies to them.

I believe in being my own medical advocate in charge of my medical team. I’ve probably had a natural propensity for that but my way of thinking in not being a traditional patient was affirmed by Dr. Devin Starlanyl, a doctor with fibromyalgia who wrote The Fibromyalgia Advocate. Fibromyalgia is a matter of living with and managing the symptoms and dealing with different medical specialties to achieve that BUT also accepting that you as the patient are central to treatment and management.

I believe that living with PF is that way as well. The doctors can only do so much. There is no single silver bullet that they can give us, no matter what type of PF, to make it all go away. We have a core set of symptoms BUT we don’t all have all the same symptoms. We have to take ownership for our disease management.

So at PatientsLikeMe, I seek to not only learn but to share what I’ve learned. If I can help one other person shorten their learning curve then perhaps I’ve helped.

On your PatientsLikeMe profile, you reported using a pulse oximeter in 2013 – how did you like it? What did it help you learn?

I found that I was having to slow down too much or struggle too much to breathe. My walking test was not yet indicating that I qualified for oxygen therapy but rather was on the cusp of requiring supplemental oxygen. I was concerned about the damage to my body.

I purchased an inexpensive pulse oximeter to check my saturation. I soon realized that being short of breath was not a reliable indicator that my oxygen saturation had dropped below 90%. Having the oximeter to give me a measure of my saturation helped me to better interpret and listen to the other biofeedback that my body was giving me.

The oximeter helped me to manage my activity so that fear didn’t turn me into a tortoise that either slowed way down or seldom moved. I got a better handle on just how much and how fast I could do things to keep active, to keep my body healthy, to exercise all the parts of my respiratory system, and yet to do it SAFELY!

Looks like you use your profile tracking charts and reports a lot on PatientsLikeMe- why do you donate so much health data, and how do you think that will change healthcare for people living with PF?

Again, my propensity. I love learning! I love sharing what I learn! I keep my own spreadsheets with my medical data but that only benefits me. I know that one of the problems for researchers is accessing a sample population large enough to make meaningful inferences from their findings. And finding a large population in a given geographical area for a rare disease is difficult. Going outside the geographical area is expensive. So hopefully the remote sharing of information will be the answer.

We are all so very different and so many of us also have other health issues on top of the PF. So who knows what comparing us will show? But throughout life I’ve been amazed at how seemingly inconsequential, seemingly totally unconnected pieces of information can come together at a later point and TURN ON the light bulb!

So why not share my health data? It really is anonymous. Unless I provide more identifying information, I’m just a name and a face but maybe with enough names and faces we can get some answers that will benefit us all.

 Share this post on twitter and help spread the word for pulmonary fibrosis awareness.


Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results

Posted April 18th, 2014 by

Back at the beginning of April, we launched a new blog series called Patients as Partners that highlights the results and feedback PatientsLikeMe members give to questionnaires on our Open Research Exchange (ORE) platform. This time around, we’re sharing the results of the Perceived Medical Condition Self-Management Scale (PMCSMS), a health measure that looks at how confident people are in managing their own conditions. More than 1,500 members from 9 different condition communities on PatientsLikeMe took part. They worked with our research partner Ken Wallston from Vanderbilt University to make the tool the best it can be. (Thank you to everyone that participated! This is your data doing good.) Check out the PMCSMS results and keep your eyes peeled for more ORE questionnaire results as we continue the series on the blog.

What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.


“Pay it forward.” Following up with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori

Posted March 27th, 2014 by

 

This is Lori’s third interview on the PatientsLikeMe blog! She’s been sharing her journey with idiopathic pulmonary fibrosis (a rare lung disease) with all of our followers here, along with her real-world health experiences on her PatientsLikeMe profile. Since the last time we caught up with her, Lori has lost 70 lbs., has made the transplant list and is playing what she calls ‘the waiting waltz.’ Check out the entire interview below where she talks about ‘life on the list’ and what inspires her to donate her health data. And don’t forget to check out Lori’s own blog called Reality Gasps. Thank you Lori for continuing to share and inspire!

If you missed one of her previous interviews you can find those here.

 

 

You share a lot about reaching your weight loss goal (70 lbs! That’s awesome!). Can you describe what exercise means to someone living with IPF? And some of the other ways you achieved your goal?

For someone living with IPF, exercise isn’t about pushing yourself to go farther, faster or harder — it’s about endurance. Pulmonary Rehab is always focused on doing whatever you’re doing for as long as you can. That’s because endurance equals muscle efficiency. The more efficiently the body can use oxygen, the easier it is to breathe. Right now, I can do 30-35 minutes on the treadmill at 1 mph. I’m not setting any records, but I am moving, and that’s really the key to all. Activity is difficult for anyone with PF because oxygen sats plummet so quickly. So all you can really do is move as often as you can for as long as you can. I marked a 600-ft circuit (4 laps) in the house and practice my 6-minute walk several times a day (600 feet in 6 minutes is a baseline standard). I go to Rehab every week, and I have a pedal exerciser that I use while I watch TV. It sits on the floor for use with the feet, or I can put it on a table for use with my hands. Every little bit helps!

Plus, I have discovered a calorie-burning secret weapon available specifically for PF patients — breathing. My pulmonologist told me that the average healthy person expends about 2% of total daily energy on breathing. People with PF expend 20% on breathing, and someone who is end-stage like me probably uses more than that. Dragging air into these stiff old lungs is hard work! My transplant coordinator agrees, and warns her patients that post-tx, we really need to watch what we eat because we aren’t spending nearly the energy we did before on breathing or anything else.

Can you tell us a little about how you get your Lung Allocation Score and what that means for placing you on ‘The List’?

Everyone who is approved for the lung transplant waiting list receives a Lung Allocation Score (LAS), ranging from 0 to 100. The LAS is used to determine your location on a Transplant Center’s waiting list, and is based on medical urgency and the potential for survival post transplant. When I was listed in February, my LAS was 62, and four weeks later it was increased to 71. The average LAS at Barnes is in the 40s. I am neck and neck with another candidate for the #1 spot — luckily we have different tissue types, so we are looking for different donors.

Since my score is so high, I am re-evaluated every two weeks. Anyone with a LAS below 50 is re-evaluated every four weeks. The bi-weekly eval includes a PFT (FEV1), 6-minute walk, chest x-ray, blood tests and meeting with a pulmonologist.

It’s important to understand that being #1 on the list doesn’t mean that I will get the next lungs that become available. They still have to match size, blood and tissue type . But, because of my high placement on the list, I will be considered first for every donor lung.

And did you have a ‘fake’ heart attack?!

This was one of those “blessings in disguise.” At Barnes, the evaluation for transplant list is a 4-day process. My husband and I were there for Day 1, Test 1 — blood work and an EKG. Pretty routine stuff that I never have an issue with, except this time. When I shuffled from the chair where they drew blood, to the table where they hooked me up to the EKG, my sats dropped (normal) and my heart started to pound (also normal). The tech gave me a few minutes to recover and then ran a strip. She got quiet and left the room, then came back and ran another strip. She left the room again, came back and ran a third strip. I was wondering what was going on because no one ever runs three strips and she kept asking me if I felt okay (I felt fine). Then suddenly, the room was full of people (the acute response team). Among them was a resident who informed me I was having a heart attack. I assured him I wasn’t. He said something about inverted waves and the EKG looking like I was having a coronary. The only problem was, I felt fine… not just fine, completely normal! They sent me to the ER anyway, where multiple EKGs and blood work showed no signs of heart attack. But, a comparison with an EKG I’d had 6 months earlier showed a slight change, so they admitted me.

I ended up having a heart catheterization, which I was scheduled for later in the week anyway. The cath was clear, beautiful in fact. And, they decided to complete all of the tests I’d had scheduled that week as an inpatient instead of an outpatient. In exchange for three days of lousy food, I was able to complete the eval without the stress of driving to and from Barnes everyday in sub-freezing temperatures. My husband got a nice reprieve, too!

You talked a little on your own blog about ‘Life on the List.’ Can you share with the community what that means for you day-to-day?

Getting on the list was a goal I’d had for more than two years. In that time, it had almost become a destination in itself — everything was focused on losing weight and getting on the list. Once I was on the list, everything would be fine. But getting listed is just the beginning of a whole new journey where I have a lot less control over what’s happening. It would be easy to become overwhelmed with frustration or fear or panic — I’ve felt all of those at one point or another. Instead of giving in to these emotions, however, I’m trying very hard just to let go and focus on the things that I can have an impact on. I can’t change when my donor match will be found, but I can keep myself as active as possible so I am ready when the call comes. I can’t predict what my recovery will be like or how long I will survive afterwards, but I can be present and involved right now in the lives of my family and friends. So for me, Life on the List is pretty much a one day at a time kind of thing. I hope, I pray, I plod, and I wait.

I noticed on your PatientsLikeMe profile that you’ve been consistently using your PF Severity Score and symptom report. What do you find helpful about these tools and what inspires you to donate so much data? 

I did it for the t-shirt. Kidding! I really love having one place where I can get a complete picture of what’s going on — not just test scores or symptoms, but also how I’m feeling in relation to everything. The various questions help me tune into my mental, emotional and physical states. And the more I understand about what’s happening with me, the better informed I can keep my doctors, and that helps everything.

As for donating data, I am happy to do it. The treatments and techniques that I am benefiting from today were developed with information from patients who came before. Sharing my info is the best way I can think of to pay it forward.