LUNGevity Foundation and PatientsLikeMe Unite for New Partnership

Posted October 30th, 2014 by

Organizations Team Up to Enhance Patient Network for People Living with Lung Cancer,
Expand Reach for Research

Washington, DC (October 30, 2014) – Today, LUNGevity Foundation, the leading lung cancer nonprofit, and PatientsLikeMe, the leading patient network, announced a joint initiative to help people diagnosed with lung cancer. The organizations are collaborating to increase the number of lung cancer members on PatientsLikeMe so that more patient-reported information can potentially guide research on the condition. LUNGevity will also continuously provide information on lung cancer to enrich PatientsLikeMe’s content, and in the longer term, will become the first nonprofit to integrate and display dynamic data from PatientsLikeMe on its own website.

PatientsLikeMe is a unique tool that helps individuals living with lung cancer to learn from others. Members can gain a real world understanding of lung cancer treatments and symptoms, track their condition, and contribute health data for research. “Our work with LUNGevity aims to create the premier lung cancer registry in the world, and to make a lasting impact on research and on those who live with the condition every day,” said PatientsLikeMe Executive Vice President of Marketing and Patient Advocacy Michael Evers.

The initiative will provide a complementary information-gathering resource to LUNGevity Foundation’s powerful educational resources and Lung Cancer Support Community (LCSC). Andrea Stern Ferris, president and chairman of LUNGevity, said it also gives people easy access to firsthand information they cannot easily find anywhere else. “We are pleased to partner with PatientsLikeMe because it is a powerful resource for patients to learn from other survivors and to be more empowered in the healthcare process.”

LUNGevity Foundation’s annual Breathe Deep Boston Walk on Saturday, November 1, 2014 raises awareness for the fight against lung cancer. PatientsLikeMe will participate in the event and will provide information about the registry to interested survivors, family members, and friends. More information on the event is available at www.lungevity.org/boston.

PatientsLikeMe welcomes anyone living with lung cancer to join the website.

About Lung Cancer
More information on these statistics is available at www.LUNGevity.org

  • 1 in 14 Americans is diagnosed with lung cancer in their lifetime
  • More than 224,000 people in the U.S. will be diagnosed with lung cancer this year
  • About 60% of all new lung cancer diagnoses are among people who have never smoked or are former smokers
  • Lung cancer kills more people than the next three cancers (colorectal, breast, and pancreatic) combined
  • Only 17% of all people diagnosed with lung cancer will survive 5 years or more, BUT if it’s caught before it spreads, the chance for 5-year survival improves dramatically

About LUNGevity Foundation
LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as by providing community, support, and education for all those affected by the disease. Our vision is a world where no one dies of lung cancer. For more information about LUNGevity Foundation, please visit www.LUNGevity.org.

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 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Media Contacts
Aliza Bran
LUNGevity
(202) 414-0798
abran@susandavis.com

Margot Carlson Delogne
PatientsLikeMe
(781) 492-1039
mcdelogne@patientslikeme.com


A decade of psoriasis awareness

Posted October 28th, 2014 by

Today marks the ten-year anniversary of World Psoriasis Day, a day with four goals: raise awareness for the condition, improve access to treatment, increase understanding of known information and build unity among the global psoriasis community.

And after ten years of raising awareness, it’s time to step it up a notch. Tomorrow, the International Federation of Psoriasis Associations (IFPA) is going to create a tidal wave of awareness on social media with their “Thunderclap” campaign. Join in here or click the sidebar on the right. When you join the movement, a World Psoriasis Day message will automatically be posted on your Facebook, Twitter or Tumblr account at 12:00pm Central European Time (7:00am on the east coast). You can share your own message with the #psoriasis and #WPD14 hashtags as well.

Check out some of our past posts on psoriasis, including the results of our “Uncovering Psoriasis” surveys, patient interviews (with Maria, David and Erica) and what doctors Jerry Bagel and Steve Feldman had to say about psoriasis. And if you’re living with psoriasis, don’t forget to connect with the community at PatientsLikeMe – more than 4,800 people are sharing their experiences and stories with each other.

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Getting to know our 2014 Team of Advisors – Lisa

Posted October 27th, 2014 by

A few weeks ago, we kicked off the “Getting to know our 2014 Team of Advisors” blog series with Dana, a PatientsLikeMe member from New Jersey that is living with bipolar II. And now, we’d like to introduce you to another member of the team – Lisa. 

About Lisa (aka lcs)

Lisa’s recent work experience was to help healthcare providers improve care delivery working for Cerner Homecare, a home health/hospice software solution, and Press Ganey, a patient satisfaction measurement/improvement organization. She is very knowledgeable about providers/systems and the flaws in the system. She 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, and she is now a volunteer at National Patient Advocate Foundation, and a Mom whose daughter just got married in June.

 

Lisa on being part of the Team of Advisors

“When we had our first in-person meeting in Cambridge, we were a group of strangers who had no idea what to expect. We quickly learned we were connected by our common experiences and our passion to improve the patient’s experience. I think we were all surprised that our variety of health conditions gave us much more in common than we anticipated. Our passion and respective experiences made the discussion rich. And the PatientsLikeMe Team made us feel special and like we were part of the team. I think dinner the night of our arrival, before we’d had any formal introductions to each other, lasted over 3 hours and ended only because of fatigue!

Before I was introduced to the history and mission of PatientsLikeMe at a deeper level, I was an advocate and I knew I was benefitting from the community and tools. Learning more about the history of the brothers, the openness of the culture and the passion shared by the formal team has made me an evangelist.”

Lisa’s view on patient centeredness

“Patient centeredness is a new buzz-word in healthcare today. It’s somewhat oversimplified, but at its most basic it is putting the patient at the center of care. This means many things in healthcare: ensuring access to care, engagement of the patient at and between visits in their own care, integrated care across specialties. In research: collaboration among researchers to advance discoveries as the priority, with financial return secondary; finding a better balance between patient safety and speed to market of new discoveries, improving patient participation in clinical trials.”

Lisa’s contribution to researchers at the University of Maryland 

PatientsLikeMe recently invited the University of Maryland (UMD) to our Cambridge office for a three day consortium that kicked off a partnership funded by their PATIENTS program, which aims to collect patient input and feedback on all phases of research, from ideas to published results. For one of the working sessions we invited Lisa to join us remotely, to discuss her journey with Parkinson’s disease (PD), and share her perspective and expertise as a patient. Here’s what she experienced:

“When I was still working, I learned that Parkinson’s affected my ‘public speaking’ ability. So, starting our discussion with a Q&A format helped me feel that it wasn’t presenting but rather just talking with colleagues. Also, speaking ‘as a patient’ meant I didn’t have to pretend…like if the right word didn’t come to me quickly, it was okay. The PatientsLikeMe team made it easy.

I had to work out my thoughts in advance and at first had considered sharing ‘data’ about PD. As I thought further though I realized that they live with data, they don’t live with PD. Instead I tried to share my experience through storytelling, hoping I could bring them into the life of a PWP on a daily basis.

Two things came as a surprise, both out of the questions I was asked by the UMD team. When we opened up the discussion to questions, there was some good discussion about the hurdles of participating in a clinical trial from the patient’s perspective. But then the researchers asked me questions I didn’t expect – not inappropriate, just surprising to me. One [of] the researchers wanted to know how my condition affected my family.

Another asked me, “what would my experience be like if I didn’t have PatientsLikeMe as a resource?” That one made me think. I hadn’t realized that I’d probably have no idea what I didn’t have. I would not know that other patients often have this onset of anxiety in public that they’d never had before. I would not know that there is a skin condition associated with PD. I would have a list of meds I kept and probably wouldn’t be able to go back and see start and stop dates because I wouldn’t have bothered saving that data…..

Patient participation in research is more than recruitment and trial results. I think a patient should participate in the study design process – before the Institutional Review Board approves. Be more creative in the design:

  • Ensure patients who meet the study criteria KNOW about the study – extend your reach to leverage support groups, forums and patients.
  • Ensure patients have ACCESS to the study – if your study requires multiple visits and has a handful of study sites, you’re limiting yourself to a finite number of potential participants.
  • Ensure patients learn about the study RESULTS – we need to know what we did mattered so we’re inspired to do it again, so we’re inspired to tell others.

For the PD community, a recent study found that only 1 in 10 patients with Parkinson’s disease have participated in a trial. PARTICIPATE! My experience is that YOU have to go find them. Sure, if you see a doctor in an academic setting, you’ll see flyers posted on the bulletin boards about trials (your provider may or may not mention to you). PatientsLikeMe has a clinical trials tab (did you know that?). PD has Fox Trial Finders and I suspect there are other condition specific registries. Or go to http://clinicaltrials.gov/ and search a database of private and public clinical trials. Together we can all help each other and ourselves!”

More about the 2014 Team of Advisors

They’re a group of 14 PatientsLikeMe members who will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.

So where did we find our 2014 Team? We posted an open call for applications in the forums, and were blown away by the response! The Team includes veterans, nurses, social workers, academics and advocates; all living with different conditions.

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Depression Awareness Month- What does it feel like?

Posted October 26th, 2014 by

Here at PatientsLikeMe, there are thousands of people sharing their experiences with more than a dozen mental health conditions, including 15,000 patients who report major depressive disorder and 1,700 patients who report postpartum depression. What do they have to say? This word cloud has some of the most commonly used phrases on our mental health forum.

It gives you a feel of the many emotions, concerns and thoughts that surround the topic of mental health. But the best way to increase awareness and knowledge, we believe, is to learn from real patients. To help show what it’s like to live with depression, we thought we’d share some of our members’ candid answers to the question, “What does your depression feel like?”

  • “My last depressive state felt like I was in a well with no way to get out. I would be near the top, but oops….down I go. I truly felt that I would not be able to pull myself out of this one. I felt hopeless, worthless and so damn stupid, because I could not be like other people, or should say what I think are normal people.”
  • “It feels like living in a glass box. You can see the rest of the world going about life, laughing, bustling about, doing things, but they can’t see you or hear you, or touch you, or notice you at all, and you cannot remember how to do the things that they are doing, like laughing, and just being ordinary and satisfied with it. You are totally alone although surrounded by people.”
  • “It feels like walking in a dimly lit hallway (or totally black, depending on the severity) with no exit in sight and no one else around.  You keep walking hoping to come to the end, trying to feel along the walls for some sort of door that will take you out of this tunnel, but to no success. At the beginning you feel like there has to be an end or a door of some sort – something to get you out, but as you keep walking, your hopes damper by each step. You try yelling for help, but no one hears you.”
  • “Depression is very much like feeling as if I have no arms nor legs and (what’s left of) my body is upright in the middle of a road on a cold, dark, foggy morning. I can’t run. I can’t walk or crawl. In fact, I have no options. I have no memory of how I came to be there. I know I’m going to die, I don’t know when or exactly how. There’s nobody around who sees me or understands my situation. If somebody gets close by and I scream, they’ll run away in fear. My family has no idea where I am and I’m alone… except for the headlights down the road.”

Can you relate to any of these descriptions? If you’ve battled depression, we encourage you to join our growing mental health community and connect with patients just like you.

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Think pink- breast cancer awareness

Posted October 24th, 2014 by

Everywhere you look during October, you’re probably seeing some pink for National Breast Cancer Awareness Month. But it’s about more than just a color; it’s about helping women now by promoting early detection through regular mammograms and working to help those already diagnosed with breast cancer understand the journey ahead.

According to the National Breast Cancer Foundation (NBCF), breast cancer is the most commonly diagnosed cancer in women, and every year, over 220,000 women in the United States will learn they are living with it. It’s not just limited to women, though. Over 2,000 American men will be diagnosed as well. But the earlier breast cancer is caught, the more treatable it is. Learning about proper screening methods (including self-exams and mammograms) and the genetic and environmental risk factors associated with breast cancer can really make a difference.

So this month, think pink to help spread awareness and share about your experiences with the #BreastCancerAwareness hashtag. If you’ve recently been diagnosed with breast cancer, check out Beyond the Shock, a huge online resource organized by the NBCF that includes videos on everything from the basics of breast cancer to treatment options and coping methods. And don’t forget there are more than 1,000 others in the breast cancer community on PatientsLikeMe. If you’re looking for support or have questions, join the community and talk to people who get what you’re going through.

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“Hope won’t make it happen” – PatientsLikeMe member Phil shares about her experiences with lung cancer

Posted October 22nd, 2014 by

That’s Phil’s (PhillyH) personal motto in life – “hope won’t make it happen.” She’s a PatientsLikeMe member who hails from Northampton in the United Kingdom and was diagnosed with lung cancer in 2012. Ever since then, she’s been learning to live with the ups and downs of her condition. She recently shared her experiences in an interview with us, everything from the reaction she had after her blunt diagnosis to her treatment decisions and son’s new tattoo. Phil also shared her thoughts on what every person who has just been diagnosed with lung cancer should know. As she says, “If you don’t know, you can’t do” – read below to learn about her lung cancer journey.

When you were diagnosed with lung cancer in 2012, what was going
through your mind?

My first reaction was defense. Somehow I had to deflect the enormity of what I had been told. I was so disappointed, I had been prepared for pneumonia. After all I felt well, wasn’t sick, wasn’t losing weight, still doing everything I had always done. I was so very angry about the way the doctor gave me the news. Before I had even sat down she bluntly announced “well it’s not good news.” I’m not really sure I heard much after that (if she had said the biopsy shows… then I know that’s fact, not her opinion).

It was so brutal. I asked what my life expectancy was and whether chemotherapy would help me. The response was “it might give you a few extra months.” All I wanted to do was run, hide, escape. The reality was that I had to be strong for both myself and my husband who pretty much fell apart at the news.

We had a brief meeting with a Macmillan nurse who was very sympathetic but not very helpful. There was no treatment plan, I could not have new lungs, I could not have resection, all that I could have was palliative care. Telling our immediate family and friends was hard. It was very emotional in the beginning. The care and kindness shown by friends was overwhelming and amazing. And still is.

My experience confirms to me that you should always have someone with you even if they can’t help much. It deflects some of the isolation, the why me feelings.

That diagnosis was given on 31st July 2012. I was in a very dark place after this as I had no control. I was powerless. It felt like my husband had seen me die there and then. Then I heard nothing from anyone. I was expecting to get some news of what happens next. And waited, and waited and waited. That was scary. I contacted my GP who chased the hospital and eventually on 19th August I had a treatment plan. I also was better informed about the cancer and told it was very slow growing. But incurable. The treatment would hopefully provide some control over the disease and keep it at bay.

Targeted therapy, 1 x 250 g IRESSA tablet (Gefitnib) daily. And blood tests and oncology appointments every four weeks. CT chest and liver scans every 3 months. I felt that was good result.

How has your daily life changed since your diagnosis?

From August 2012 through to July 2014 it really didn’t change that much. I still maintained my full time job as a professional development trainer. I went on holiday, I did gardening, I did write a bucket list and have fulfilled much of it, even going to Chicago. The one thing I didn’t do was a hot air balloon ride. Fear held me back, I wasn’t sure I would be able to breathe properly.

I have lost stamina, and strength in the last two years. I can’t do heavy stuff like digging, and putting up cupboards. I can paint walls and order people about to get things done (in a nice way of course).

I retired in May 2014 for a number of reasons. Firstly my relationship with my boss was not productive and was increasingly frustrating. I was finding full time harder and harder. I could work from home but I don’t possess the discipline to do this long term. Financially, it meant I lost a portion of my pension but I would rather have peace and calm in my life. I can’t be doing with office politics. Never mind the fact that I worked in public service and it is a very challenging and yet fragile environment to work.

The pivotal change came in July when my oncologist told me stop taking the IRESSA tablets. My cancer had become resistant to it. The scan showed an 8mm increase in size over a three month period. I was bereft, alarmed, panicked. It was like my protective cloak had been taken from me. I still have a supply but have stopped taking them as instructed. The latest scan showed a similar increase over three months. So it seems to be growing a 3mm a month. My oncologist still recommends observation so I return again in December.

Most of the time I feel good. I do get tired and some days are better than others. Sweating/flushing especially around waking time and morning nausea don’t last too long. A piece of dry toast usually stabilizes me.

Had a flu jab Tuesday and have felt rough all week. This is compounded by Sciatica, which sneaked up on me about 12 days ago. It’s beginning to ease now. Just have stonking headache now. Probably due to a busy few days. It went something like this. Monday 29th September right leg is painful, when sitting or getting up from a sitting position. Tuesday 30th speak with a friend who suggests sciatica. It’s okay once I’m mobile so put it to the back of my mind. Thursday 2nd Oct drove 180 miles to South Wales to see my son and his family. Sunday weather warnings make me cut short my visit and I leave around 4pm that day. Leg has been hurting more, so take painkillers. Monday see GP who announces immediately that I [have] sciatica. He knows this from the way I stagger into his room. Feel such an idiot when I get up in waiting room full of people and can’t get my limbs in action. Any way he prescribes painkillers but regularly not just when the pain kicks in. Tuesday blood test in readiness for oncology appt. Nurse offers flu jab so I take it. Tell her I have a bit of a sore throat and that’s okay. If you get flu it’s because it’s already there. Wednesday arm is sore as is throat but otherwise okay. Thursday oncology scan shows slight progression again, she’s not unduly worried. She arranges for pelvis and spine xrays because of the sciatica. Thursday have the xrays and they do not show anything. If I’m still in pain on Tuesday/Wednesday next week contact them. They will arrange CT/MRI scans. So alert to my situation. Discussed concerns re chemotherapy as aware it can poison my system. Shared thoughts on alternative meds such as Phoenix Tears. She cannot comment but does say not to mix supplements.

Friday had my nails done, they are beautiful, my new ring looks even better. Not expensive and life’s little pleasures are important to me.

Reading books on fighting cancer and will adjust diet to build immune system and fight cells. Would love to use my mini trampoline but husband would have a fit. He is a born pessimist, and well you must know that I am the opposite.

The other day my son Carter texted me asking what are you favorite flowers in the whole wide world. I tell him carnations, yellow and white. Thinking that a big bouquet is coming my way, big smile on my face. He then sends a txt pic of his upper arm with a carnation tattooed on it! I still smiled. That’s who he is. He wanted a permanent reminder and told me the flower won’t die. Through tears I still smile.

Sometimes I think I’m in denial, but I know that I’m not. I get up every day thankful I’m still here, still loved, still wanting to live till I’m a hundred.

You recently joined PatientsLikeMe – what have you found useful so far? And what do you hope to learn from your fellow community members?

It has been really helpful to read how other people are doing, what meds they are [on] and compare their treatment regimes to mine. This informs me so that I can ask better questions of my oncologist and Macmillan team. I learn something every time I go onto the site, how people feel, how they are coping or not, what their lives are like. It’s very comforting to be able to dip in and out without any expectations on either side.

Can you share how you’ve gone about making treatment decisions?

My biggest decision so far is not to undertake intravenous chemotherapy. The option offered requires weekly vitamin b12 injections, folic acid 5 days before chemo (a combination of cisplatin and premextred) with anti sickness tablets for the following 2 days, and I know chemo will kill good as well as cancer cells. It won’t ‘cure’ me. It won’t get rid of the cancer. So each time I see my oncologist I discuss my health and make my decision. It doesn’t hurt although I feel a pressure sensation in the left lung on my back. (Imagination?)

If you could share one thing with someone who’s been recently diagnosed
with lung cancer, what would it be?

Take time to absorb the information. If there are words, expressions that you don’t understand ask for clarity. Get in terms that you do understand. Join a site like this. Do be wary of internet information and check out the site’s reputation, reliability and responsiveness to you and your questions.

If it is at all possible ask if the diagnosis meeting can be recorded. That way when you feel more adjusted you can listen in the privacy of home. You’ll pick things up that you missed first time round. It will help you prepare a list of questions to take to your next appointment.

If you don’t know you can’t do.

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“I was just doing my job” – PatientsLikeMe member Lucas talks about his experiences with PTSD after serving in the Marines

Posted October 21st, 2014 by

PatientsLikeMe member Lucas (Freedom666420), or Sarge, as his friends and fellow soldiers call him, served in the Marines during two tours in Iraq and was injured while literally hoisting his entire squad up and over a wall to take cover from enemy fire. He recently spoke with Sarah, a PatientsLikeMe community moderator, and shared about his experiences in an interview. Lucas talked about his recurring insomnia and nightmares, and how quitting alcohol and speaking with fellow veterans has helped him cope with his PTSD. Read what he had to say below.

Will you tell us a little about your story?
I enlisted in the military right before I turned 18, graduated basic training about a week after I turned 18. I was in the Marine Corps for about three years total after all the paper work was done. I was discharged medically- honorable retirement discharge because I was injured.

I was on my second tour, about half way through when we were taking air fire and I was trying to get everybody over the wall and I looked back, after I got the last person over, I looked back to make sure everything was clear and that’s when I saw an RPG coming at us and I pushed the last guy over the way and I was blown up. I was hit by shrapnel and the explosion blew me about 61 feet past the wall and when I landed I shattered my right heel and I had shrapnel across my face and shrapnel in my right hip. I walked back to base.

You want to make sure, whenever you’re a squad leader, you want to make sure everyone is safe before you are.

How many people did you get over the wall that day?
I got 22 people over the wall that day.

Wow, you’re such a hero.
I don’t say I’m a hero, I was just doing my job.  I like to be recognized for some things but I served in the military, I was just doing my job.

What are your experiences living with PTSD?
I have nightmares. Basically I have insomnia because I don’t sleep. Every time I do sleep, all I think about are my brothers that didn’t get to go home to their families. And the men that I served with all the way through basic SOI (School of Infantry) training and all my other training, there were several that I went with and I actually went to their families and gave them all the information they needed to know. I wanted them to know personally what happened and how everything went. Because most families never get closure from the military, they just get a statement saying your son (or daughter) has been KIA (killed in action) and they never give a reason of how they went. I wanted everyone’s family in my platoon to know how they went. I know my family would want closure if I were killed.

Are you currently treating your PTSD?
It’s something that I don’t know that I’m ever going to get past. There are things that are drilled into my mind right now that I don’t know that I’m ever going to get past.

That’s why the VA wanted to send me to a counselor and I told them I’m not going to go talk to someone who’s never been there before. There are people that I’ll talk to about some stuff, and there are people I won’t talk to.

It’s one of those things where you have to be very comfortable with the person you’re talking to. I had a horrible experience when I was younger with a counselor, so I don’t like counselors. I’ve been through ten of them.

I think I’m just better off going to the VFW (Veterans of Foreign Wars) because there’s one right in my town. I quit drinking so I go and drink a non-alcoholic beer or soda and I talk to them. I quit drinking a couple years after the military because for the first two and a half years there wasn’t a day I went sober. I drank constantly. There were days when people worried about me because I was always drinking. But I was able to sleep. I needed to be able to sleep, so I slept. I’ve been sober for going on 4 ½ years now, but I just wish I could close my eyes and not see faces.

What helps you cope?
Mostly I talk to another Vietnam vet. It just seems like talking about it makes it a lot better. It’s very helpful when you talk to somebody about it. I feel like you have to talk to somebody else that’s been through something similar. If you find an older man who maybe fought in Vietnam, they give you great input on everything.

It’s better to connect with somebody who you can open up to because you’re able to speak about it and try to get some relief for yourself because if you keep it all bottled up inside, it just gets worse from there. You know before I started talking to the Vietnam veteran who I’m talking to, there were plenty of times that I thought about killing myself. But after talking to him for the past two years now, I’ve honestly begun to feel like I don’t want to anymore. I’ve started a family and things are going better for me, I just still have nightmares and flashbacks, but things get better when you actually talk to somebody that has been through something similar.

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Seeing [MS]: The invisible symptoms – hot and cold

Posted October 20th, 2014 by

Dimitri Cachia is living with multiple sclerosis (MS), and he experiences dramatic changes in his body temperature every day. These swings can aggravate his other symptoms and leave him feeling suffocated. As he puts it, “a single bead of sweat can bring me to my knees.”

 

You are now seeing hot and cold

Photographed by Jamie MacFayden
Inspired by Dimitri Cachia’s invisible symptoms

He worked with photographer Jamie MacFayden to portray his hot and cold sensations as part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which we also posted about on the blog in July (blurred vision) and August (pain). It’s all about raising awareness and showing everyone the invisible symptoms some people are living with because of their MS. Stay tuned for more Seeing [MS] posts.

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“We are many” – PatientsLikeMe member Laura reports back on her experiences as an 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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MS members share about their PatientsLikeMeInMotion™ experiences

Posted October 15th, 2014 by

PatientsLikeMeInMotion™ is a way to celebrate our three star members (super health data donors) and sponsor them at events so that they can raise awareness for their condition. If you’re passionate about advocacy and you’re participating in a walk, run or other fundraiser on behalf of your condition, learn more and sign up right here. 

We caught up with three MS community members who are active participants in PatientsLikeMeInMotion. They shared about the events they’ve been a part of over the years, why advocacy is important to them and several ways PatientsLikeMe has helped them manage their MS. Scroll down to read what they had to say. 

Ajcoia 

“Since being diagnosed in 2002, and after my sister was diagnosed in 2001, I have participated and captained every event the Greater Delaware Valley MS Society chapter has offered. This includes the one-day walks, MS150, Muckfest MS and Challenge Walk MS. My favorite event is the Challenge Walk MS, in which I have participated all 12 years. I have met so many wonderful and inspiring people through this event, which brings me back year after year.

Advocacy is huge, because without voices out there speaking on our behalf, we would never get any funding or support. I have been to Washington, D.C. 3 times on behalf of the National MS Society, and I know that our stories being told to legislators help.

PatientsLikeMe has been a wonderful tool for support and also a great way to keep track of symptoms. I love that I receive valuable information about MS and data that they have collected. I also love that they support my teams and I when we participate in events, both monetarily and with their great tee shirts.”

Special1

“I have done the Southern California/Nevada Walk MS events every year since diagnosed in 2009. So I have participated in approximately 5 walks. The first year, I was not able to walk far because of fatigue and heat intolerance. The 2nd and 3rd year, I sat and cheered my team on. This year, I was so glad I was able to walk the 5k with my team of 32 members. We have grown from 14 members the first year. When I form the team, I always go with raising awareness and then concentrate on raising funds. The weather was cool this year, a great day to walk, and I am glad I was able to walk. Last year, the Beat MS Dance walk was started by “So You Think You Can Dance” member Courtney Galiano, and I participated in the event for the second time on Sep 13, 2014.

I have always been a people person, and since I have to be home so much because of symptoms from my MS, I love getting out and seeing new people, including people I meet online or through others. All have showed me that as long as I just keep doing what I CAN do in this new life of mine, I will continue to find reasons to smile. This last year one of our team members, a 16 year old, was diagnosed with MS, and it opened everyone’s eyes and reminded them that life can change at any moment. Value today.

I worked in the medical field for 15 years, and I medically retired due to cognitive issues. When working, I would push my patients to fight, whether it was high blood pressure, diabetes or any illness they were being attacked by. They would come back and thank me through the years. So when I was diagnosed the first year, I was glad to know I wasn’t just going crazy, but I didn’t know how to now be the patient. Slowly I fell into the role of patient, advocate and fighter. I have gotten calls from old coworkers to get info from me to give to patients who are newly diagnosed. Those calls made me a little sad, but also made me happy because I was still needed.

I first heard about PatientsLikeMe on a social media site. I signed on and connected with strangers who I now call friends, I log my meds and health info and sometimes print my health info out and take it with me to doctor’s visits. I like how I get an email asking me how I’m doing, and it’s so easy to use. PatientsLikeMe has also helped me raise awareness and funds for my walks and MS events since 2009.” 

CKBeagle

“I walk. I walk every day. I walk my dogs every day. I walk for my physical health. I walk to get outside for my mental health. For the past several years I have walked for the MS Society and I have the t-shirts to prove it.

Most recently, I have been a part of the Journey of Hope Walks that the MS Society uses to help provide additional funding for society-approved MS Clinics and MS Specialty Care Centers. Currently, I am team captain for our AbFab Concord Neurology Team for MS Specialty Care Center walk team. I know, bad name, but I had to make sure that everything was in there, especially the AbFab, because that is important. Why do I do it? I am not a neurologist. I don’t work for Concord Neurology. I don’t even work for Concord Hospital. I do volunteer at the “clinic” once a month as peer support. Did I forget to mention that I have MS?

The clinic is a wonderful service for patients with MS. On clinic days, they have the opportunity to meet with a neurologist, counselor, physical therapist, occupational therapist, social worker, nutritionist, MS Society representative and peer support to discuss any and all aspects of how MS affects their lives and how their life affects their MS. For the most part, I spend a lot of time asking questions and listening. I try to provide direction on what strategies I have tried to deal with different situations and offer an understanding ear for complaints. I encourage people to relay information to the doctor or therapists even if they think it is unimportant. I learn how other people are coping with the changes brought on by MS. I feel I get as much out of it as I give to it. We all have something to offer.

One of the things that I make sure to give people is the information on the PatientsLikeMe website. I have found it to be an interesting resource for information on treatments and also a way to track my health and attitude history. I especially enjoy the researcher interest on the site where you can provide input on treatments or general health through surveys.

On top of that, I LOVE the PatientsLikeMeInMotion™ program. It was how I first became aware of PatientsLikeMe. I got in touch with the community team, let them know when and where my walk was, kept myself as a 3-star patient and bam! I was accepted into the program. They made a donation to my walk and sent t-shirts for the team. Cool beans! The whole team loves the shirts and the donation helps the MS Society and the clinic. Now all I have left to do is the walk. For now that’s the easy part. Because I walk. I walk every day.”

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You’re Not You

Posted October 10th, 2014 by

There’s a greater sense of awareness around ALS lately. The IceBucketChallenge really shined a spotlight on a condition that many have heard of, but maybe not that many really understand. (If you missed it, see everyone here at PatientsLikeMe taking on the challenge, and what Steve, an ALS community member, thinks about it.

So it seems fitting that today there’s a new film coming out about what life with ALS is like. It’s called You’re Not You, and is based on the novel by Michelle Wildgen. Hilary Swank plays a successful classical pianist diagnosed with ALS. Emmy Rossum is also in the film as Bec, a directionless and brash young woman who becomes Kate’s full-time caregiver. This unlikely pair forms an intimate friendship and life-changing bond inspiring each other to live life to the fullest, while being brought together by the most challenging of circumstances. Through their unwavering support for one another, both women are moved to let go of who they were and discover who they are truly meant to be.

 

A special shout out and thank you to Hilary Swank, Emmy Rossum and Josh Duhamel for taking on the IceBucketChallenge, too!

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PatientsLikeMe and Cancer Treatment Centers of America Eastern team up to support survivors

Posted October 8th, 2014 by

Online Network Connects Patients, Offers Valuable Information and Tools

CAMBRIDGE, Mass.—October 8, 2014PatientsLikeMe and Cancer Treatment Centers of America (CTCA) at Eastern Regional Medical Center (Eastern) have joined forces to help ease patients’ transitions from cancer treatment to survivorship. The collaborative effort is designed to give patients undergoing or completing treatment direct access to a powerful online network for daily support, information and tools.

Offering a comprehensive, fully integrated approach to cancer treatment, CTCA at Eastern sees patients from around the world. “Since so many of our patients are from out of town, it’s incredibly important that we connect them with resources that extend their support and care when they go back home,” said Vice President of Marketing John Goodchild. “PatientsLikeMe will be an important addition to what we do and a way for our patients to not only get great support and services, but to contribute data that could prove valuable for future cancer research.”

PatientsLikeMe’s Executive Vice President of Marketing and Patient Advocacy Michael Evers said CTCA at Eastern and its clinicians will be helping patients access one of the most powerful and active patient networks online. “Our members share information about how they’re managing their condition and actively contribute insights and data to help others and advance research. We’re excited to welcome the CTCA community to PatientsLikeMe. Together, we’ll give everyone the support, tools and services they need to be fully empowered on their journey with cancer.”

The relationship with CTCA Eastern is the latest in PatientsLikeMe’s expansion in cancer, which began earlier this year with an agreement with Genentech. PatientsLikeMe welcomes anyone living with cancer to join the community.

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 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About Cancer Treatment Centers of America
Cancer Treatment Centers of America, Inc. (CTCA) is a national network of five hospitals that specialize in the treatment of patients fighting complex or advanced-stage cancer. CTCA offers an integrative approach to cancer treatment that combines surgery, radiation, and chemotherapy with nutritional counseling, naturopathic medicine, mind-body therapy, and spiritual support to enhance quality of life and minimize side effects during treatment. The company serves patients from all 50 states at hospitals located in Atlanta, Chicago, Philadelphia, Phoenix and Tulsa. Known for delivering the Mother Standard® of care and Patient Empowerment Medicine®, CTCA provides patients with comprehensive information about their treatment options so they can participate in their treatment decisions. For more information about CTCA, go to www.cancercenter.com.

Contacts
Julia Scherer
Cancer Treatment Centers of America
Julia.scherer@ctca-hope.com
215.537.7469

Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


Jamie delivers keynote presentation at DIA 2014

Posted October 7th, 2014 by

Our co-founder, Jamie Heywood, recently traveled to San Diego to receive the Drug Information Association’s (DIA) 2014 President’s Award for Outstanding Achievement in World Health. With the award in his hand and speaking to everyone who was attending the event, he accepted it on behalf of the quarter million PatientsLikeMe members (this is for all of you!).

During the DIA’s 50th annual meeting, Jamie gave the keynote address, and he touched upon his personal journey in the world of healthcare and patient-reported data. He spoke about his brother, Stephen Heywood, who passed away from ALS in 2006, and how Stephen inspired the creation of the ALS Therapy Development Institute (ALSTDI) and PatientsLikeMe. Jamie also shared about “healthspan” and the potential that personal health data has to change the way we look at treatments and research. But that’s not all – watch the video below to hear everything Jamie said.

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