Seeing [MS]: The invisible symptoms – spasticity

Posted November 24th, 2014 by

Australian comedian and public speaker Tim Ferguson said it the best – “Seeing [MS] is all about helping everybody, in society, right across the world, get their heads around this mysterious and sometimes scary condition.” He’s living with multiple sclerosis (MS), and he spoke about his spasticity in the video below.

 

You are now seeing spasticity

Photographed by Matt Hoyle
Inspired by Tim Ferguson’s invisible symptoms

He worked with photographer Matt Hoyle to visualize his spasticity as part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign. It’s all about shining a light on the invisible symptoms of MS and raising awareness for the neurological condition – check out the previous pictures and stay tuned for more Seeing [MS] posts.

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Shining a light on lung cancer

Posted November 21st, 2014 by

Back in 1995, a few organizations came together to recognize Lung Cancer Awareness Day – there were a few awareness activities and some scattered fundraisers. Fast forward to now. Almost 20 years later, over 125 different lung cancer events are spread across three continents during the month of November. This is Lung Cancer Awareness Month, and the Lung Cancer Alliance (LCA) wants you and everyone you know to help shine a light on this pulmonary condition.

Here is some information you might not know, and can tell others about lung cancer:

  • In 2014, over 220,000 new people will be diagnosed with lung cancer1
  • Lung cancer is the most common cancer among both men and women
  • Lung cancer is the leading cause of death among every ethnic group, and the second leading cause of death in the U.S.2
  • Almost 80% of those diagnosed are former or non-smokers

We got a jump-start here at PatientsLikeMe. Right on November 1st, some on the team joined in the LUNGevity Foundation’s ninth annual Breathe Deep Boston 5K Walk. They’re a new partner of ours, and together, we’ll be collaborating to increase the number of lung cancer members on the site so that more patient-reported information can potentially guide research on the condition. Check out what else our partners at LUNGevity are doing to raise awareness.

How can you help shine your own spotlight on lung cancer this November?

If you’re living with lung cancer, shining a spotlight might mean giving that extra support to someone who’s going through a similar journey. Vickie just shared her story on the blog, and there are more than 1,000 lung cancer members on PatientsLikeMe. Every day, they are giving support and finding answers from others who understand what it’s like to live with lung cancer. Join in.

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1 http://www.cancer.org/cancer/lungcancer-non-smallcell/detailedguide/non-small-cell-lung-cancer-key-statistics

2http://www.lungcanceralliance.org/assets/docs/media/LCA%20Funding%20Fact%20Sheet%202011%20Final.pdf


“In my own words” – PatientsLikeMe member Vickie shares about her experiences with lung cancer

Posted November 20th, 2014 by

Meet Vickie, a PatientsLikeMe member who has survived cancer not once, but twice. She’s sharing her story, from diagnosis to survivorship, during Lung Cancer Awareness Month. She spoke about her reaction to getting diagnosed, the anxiety filled months leading up to surgery and what recovery was like post-operation. Learn about her journey below.

The journey
Occasionally I received cards in the mail offering discount lung or heart screenings. I think most people do now and then. I always throw them in the trash. In May 2012, I received one. For some reason I didn’t throw that one away. I called and scheduled an appointment for the heart and lung scan. Was told I’d get a letter in two weeks letting me know the results.

Imagine my surprise when 4 days later I received a voice mail asking me to call the hospital back as soon as possible. With feelings of dread and fear, I returned the call. Was told they were concerned about 2 places in my left lung. Was cautioned to not jump to any conclusions. They could be any number of things. I needed to have testing done. Was scheduled for MRI and PET Scan. Those results were enough to call for a biopsy.

Had the needle biopsy. My lung collapsed immediately. Very scary. Spent 1 night in the hospital. Sent home with instructions. Two days later began having problems breathing. Drove myself back to hospital and found out lung had collapsed again. This time was hospitalized 4 days.

While I was on a gurney in the ER, a pulmonologist from the hospital cancer center (didn’t know he came from cancer center at the time) came to see me. He asked me if I had been told the results of the biopsy. I told him no. He told me it was positive for cancer. Told me not to worry about it, they were going to take care of me. I remember lying there and I just nodded my head. I thought about it for about a minute then blocked it out.

The hope was to do surgery while I was in the hospital for the second lung collapse. The surgery, a lobectomy and wedge resection, would remove my upper left lobe and a portion of my lower lobe. Unfortunately the original scans showed calcium build up in an area of my heart. It was decided I needed to have the heart issue taken care of before the cancer surgery.

Had a heart stent put in. Had to be on a blood thinner for at least two months to make sure blood clots didn’t form on the stent. I then had to be off the blood thinner for a period of time. I have been seeing my oncologist every three months. Get CT scans every six months. Also see pulmonologist every three months.

The surgery
It was three months between time of diagnosis and my surgery. Seemed much longer. I was very worried the cancer would spread. When the time came for me to stop the blood thinner and no call came from doctor I was on edge. I felt they were forgetting about me. I made a call now and then to the lung cancer nurse navigator to remind them about me. I wasn’t that way all the time but I did have extreme anxiety at times. Earlier my family doctor had offered me something to help with my anxiety. I turned it down. Eventually my anxiety did reach a point where I did tell my PCP I needed some help.

Finally, the day of my surgery arrived. September 24, 2012. My parents had driven in from Colorado. Took me to the hospital. Other family would be joining them. At about 0730, the preparation began. I had no idea what kind of a journey was coming my way. I woke up October 8, 2012.

Nothing had gone as planned. What I know of that time is what I have been told by family and what I have read from my medical records. I was on a vent. I was combative and had to be restrained. I tried to pull vent out several times. I had lost enough blood I became anemic. Three days after the surgery I suffered respiratory failure. I developed an infection.

After waking up, I was very confused. I had and still have memory problems. I had to work on my penmanship. Didn’t have enough hand control to write. That has since returned. Couldn’t speak above a whisper due to a paralyzed right vocal cord from the vent. ENT told me there was a good possibility it would never come back. Ended up spending 6 months in a nursing home undergoing speech, physical and respiratory therapy.

Surviving and sharing
I find PatientsLikeMe to be a source of comfort. It is nice to know I can share my feelings and thoughts with those who have been or are going through similar experiences. It makes me stop and think about how I am doing. It is helpful to look at where I have been and see where I am and think about where I am headed.

Diagnosed June 2012 with lung cancer. Diagnosed April 2013 with uterine cancer. At last week’s checkup with pulmonologist, was shown something on my most recent scan. November 19, 2014 will be having bronchoscopy.

It has not been an easy journey. But when all is said and done, I am still alive.

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“I just kind of went on with life.” – PatientsLikeMe member Fred shares his experiences with MS

Posted November 19th, 2014 by

We’ve interviewed a lot of members on the blog over the years, and each has a different perspective on life with MS. Fred1118 has taken sharing about his life with MS to a whole new level, documenting his life in a personal photoblog and posting the pictures with the world online. Fred shared all about his experiences in a recent interview, everything from his handicap-accessible house to how physical therapy helps him stay mobile. Read his story below.

What went through your mind when you were diagnosed with RRMS back in 1994?

I didn’t really know too much about MS at the time. I’m not sure if I had even heard of it, so didn’t know what to think. The diagnosing neurologist said, “you have a mild case of MS.” I was young and carefree at the time and didn’t really worry about it too much. I kind of just went on with life.

It looks like you’ve done a lot of work on your house to make it handicap accessible. What are some tips and tricks you can share with the community?

I would say that everyone’s needs are different. It’s a good idea to have an occupational therapist that is experienced in doing home safety and accessibility evaluations come work with you in your home to see what your abilities and limitations are so he or she can make proper recommendations. I advise that people not wait until modifications are absolutely necessary before making them. I’ve been guilty of that in many regards, including waiting too long to get a power wheelchair. I should have gotten one sooner. It would have expanded my ability to go places and do things.

We saw some pictures on your photoblog of you in physical therapy – is that a daily routine? How does it help you manage your symptoms?

I was getting in home PT 3 days a week for a few months after suffering a seizure that prevented me from driving for several months. The PT is of course not a cure for MS, but it does provide exercises and strength training options that can help you maintain some abilities. When you’re sitting in a wheelchair all day, I think you can lose some function not just from the MS, but also from being sedentary, so it’s important to exercise.

Can you tell us about your daily meal set-up? 

I have a pretty simple daily meal routine. I often eat the same things day after day. For breakfast I eat some yogurt, a multigrain type bar and a banana. That rarely changes. Lunch is almost always a sandwich (some kind of meat and cheese along with some mayo) and a piece of fruit, maybe an apple, pear or peach. Dinner varies a little. A friend who lives here with me often makes a pretty bountiful garden salad that includes lettuce, spinach, beets, carrots, broccoli, cauliflower and more. Sounds good huh! In addition I’ll eat something else like canned soup, a bowl of cereal, maybe a pre-made Indian dinner that I like. Almost all meals are eaten on my wheelchair tray.

Your photoblog takes viewers through a day in your life – what inspired you to give back to others and raise awareness for MS?

I’ve been a long time volunteer with both the National MS Society and the Myelin Repair Foundation. I had never really done much volunteer work prior to my MS diagnosis. After I stopped working full time I didn’t really do much of anything productive with my time. It was actually a girlfriend who suggested contacting the MS Society to see if they had volunteer work I could do. They did, and I caught the volunteerism bug. I would recommend it to anyone. I often say that doing volunteer work is as beneficial and rewarding to the volunteer as it hopefully is to the people you’re volunteering to help.

Not everyone is as open about their personal experiences living with MS as you. What was it like working with the photographer and putting yourself out there?

I guess I’m kind of an open guy. After meeting Ted (the photographer) I felt comfortable with him and trusted him. I decided pretty much right away that I was going to be all in on this project. I figured if you’re going to do something, do it right. We hoped to have an impact with the photo essay, and only being half in so to speak wouldn’t do the job. I didn’t really do anything other than let someone take pictures of me doing things I normally do. I know Ted was amazed at how open I was. I didn’t really feel like I was doing anything all that amazing.

Photos courtesy of TGoldmanPhotography.com

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PatientsLikeMe launches “24 Days of Giving” to encourage sharing of health data for good

Posted November 16th, 2014 by

Napkin Notes Dad Garth Callaghan Joins Campaign Calling on People
to Donate Health Data Starting on Giving Tuesday

CAMBRIDGE, Mass. (November 17, 2014) - On December 2, PatientsLikeMe will launch a new campaign that will extend through the month and ask people to rethink their giving this year. PatientsLikeMe is calling on patients who are living with a chronic condition to donate their health data after donating to their favorite non-profit on Giving Tuesday.

The December campaign, officially branded “24 Days of Giving,” asks patients to simply share their health data for good. To do so, they can create a profile on PatientsLikeMe and start tracking their symptoms, treatments and quality of life. By sharing this data on the site, patients not only help themselves, but help others who can learn from their experiences, and advance research. “Our members have learned how to live better day-to-day and have contributed significantly to medical research,” said Michael Evers, PatientsLikeMe’s Executive Vice President of Marketing and Patient Advocacy. “We hope more will consider sharing their health data for their own, and the greater, good.”

At PatientsLikeMe, health data includes information about a disease or condition—how people live with it, what their doctors are doing to treat it, and what it’s like to navigate their health journey. The data are de-identified and shared with partners to help bring the patient voice to medical research, develop better clinical trials, and create new products and services that are more in tune with what patients experience and need.

Garth Callaghan, kidney cancer fighter and author of Napkin Notes, understands the importance of data for good in furthering clinical research and is an active PatientsLikeMe member. Garth has been diagnosed with cancer four times and may not live long enough to watch his daughter Emma graduate from high school. Rather than dwell on his diagnosis, Garth takes each day as a gift and a chance to connect with those he loves. He has fulfilled a promise he made to write 826 napkin notes so that Emma will have one for every day until she graduates high school. Garth uses PatientsLikeMe to share his data in the hope that others living with cancer can learn from his experience and help fight their own battles better.

“I keep my promise to Emma by sharing wisdom through my napkin notes, and I share my cancer stories online through PatientsLikeMe,” said Garth. “When I donate my data to an organization that can aggregate it and see a pattern or meaning, I’m not just helping myself, I’m helping all of the other people who are living with cancer, and their doctors.”

The “24 Days of Giving” campaign will be active across PatientsLikeMe’s Twitter and Facebook social media channels through December (#24DaysofGiving). Anyone can join PatientsLikeMe and share their experiences to help others while helping themselves. To learn more, go to www.patientslikeme.com.

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 300,000 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.

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

Rachel St. Martin
Edelman
(646) 221-6933
Rachel.St.Martin@edelman.com


“Perseverance, patience and acceptance” – PatientsLikeMe member Steve shares what it’s like to live with MND

Posted November 14th, 2014 by

Those three words describe how PatientsLikeMe member Steve says he has adapted to life with motor neuron disease (MND). He was diagnosed with MND (also known as ALS) in 2007, and technology has helped Steve navigate the challenges of living with ALS while raising three children. He’s also made a video about his journey, called “Motor Neuron Disease Made Easier.” Steve spoke with us about the decisions that come with a MND diagnosis, the inspiration for his film and “how adaptable one can be in the face of adversity.” Read more about Steve’s story below and head to his blog to watch his film.

Looking back over the last 7 years since your diagnosis with ALS/MND, is there anything you’d like to have known sooner that has helped you along your journey?

I think I was fairly pragmatic about researching the condition from the outset, so there haven’t been many surprises apart from the fact that I am still here 7 years later (and I just realized it’s actually 7 years to the hour as I write). One of the difficulties with the disease is the uncertainty of the rate or nature of its progression. There is so much equipment, mostly hideously expensive, that you will need if you want to mitigate the effects of the disease – wheelchairs, hoists, adapted vehicles, communication aids, modifications to your home, the list goes on. But if you don’t know how long, for instance, you will be able to use a standing hoist, you can’t assess whether it’s worth spending the £2000 (about $3,000USD) on one. I know there’s a degree of uncertainty with the prognosis of many illnesses but I can’t think of another which comes close to the complexity of MND.

You’ve documented your experiences in your film “My Motor Neuron Disease Made Easier” – can you share a little about your inspiration for the project?

The thought of having MND without the internet is terrifying. The amount of information available regarding equipment and solutions to our multitude of challenges is staggering. However there aren’t many websites, which bring everything together. And many have information without presenting it in a real world context. So I thought that a video demonstrating most of the equipment I use would be a simple and quick way for fellow sufferers to see what’s available, but more importantly seeing it being used. Furthermore, I have realized that for many issues there simply isn’t an off the shelf solution. And in my experience many of the healthcare professionals just aren’t very creative, so I wanted to share my ideas like the chin support, heel pressure reliever and hoisting techniques to others. Having made the video, the filmmaker, Bernard, wanted to expand the idea to how MND impacts on a family. Then finally I wanted a sixty seconds version, which could be potentially used as a hard-hitting awareness campaign. The 3000-word narrative took several days to type using eye movements, but I am proud of the results.

How has technology helped you cope with the impact of ALS/MND? Is there anything you can recommend for PALS who might not be as comfortable with technology?

Technology has undoubtedly made coping with the disease far easier. Having had over 20 years experience in IT, I appreciate that I am better equipped than most to adapt to new technology. But you really don’t need any technical ability to use an eyegaze system for communication purposes, which is the most important benefit it offers. Actually, initially I only used it for this purpose. It was only after I got more confident with eye control that I ventured out of the easy environment of The Grid 2 software and started using Windows directly. I am now able to do anything anyone else could do with a computer. It also allows me to participate with family life as I am able to control all the computers and network devices in the house, which means I can sort all the problems out. I am even in the process of buying a house using my eyes.

I arranged all the viewings, negotiated the price, organized quotes for adaptations, dealt with solicitors, scanned necessary documents, bought hoists and other equipment on Ebay, arranged dropped kerbs for wheelchair access with the council and will hopefully move before Christmas. The only thing my wife had to do was choose the sofa! So almost anything is still possible.

Your blog is testament to your incredibly busy family life! Being a father of three boys, what impact has ALS/MND had on your approach to parenting and family life?

I have to say that the impact of MND on my abilities as a father has been the hardest thing about this disease. My triplet sons were 6 years old when I was diagnosed and I was confined to a wheelchair by the time they were 8, and when they were 9 I could no longer talk to them. They are now nearly 14 and I am grateful that I am still here but we have missed out on so much, both physically and through communication.

The most obvious impact are the physical restrictions. Almost every activity that a parent enjoys with their kids has been denied to me, from kicking a ball around in a park to giving them a hug. But maybe a more important loss is that of communication.

Eyegaze is undeniably an incredible means of communication but it’s certainly not conducive to flowing conversations. Ten-year-old boys aren’t very interested in waiting around while you laboriously construct a sentence, especially if they think it’s finally going to read “no xbox for a week”! Trying to teach something using eyegaze or trying to discipline using eyegaze is at best frustrating and ineffective respectively. That’s not to say I don’t try but these are two of the most important roles of a parent, which for me have been severely compromised. However I am still able to contribute in other ways. Being able to control all the computers in the house means I can help out with IT related stuff. I have setup Minecraft servers for them and helped install mods, I have installed and monitored parental control software and setup backup facilities and  I have fixed virus problems.

When I could still drive my wheelchair independently and didn’t require a full time carer, we were still able to go out to places as a family regularly. But as the logistics of getting out got more complex, the family activities decreased, although this is equally contributable to the troglodyte tendencies of teenage boys.

What has been the most unexpected thing you have learned during your journey with ALS/MND? 

I guess it would be how adaptable one can be in the face of adversity. In one of my videos I mention remembering when I learnt about Stephen Hawking and thinking how can anyone live like that. It seemed so horrific. But I am living like that, and whilst I disagree with some PALS who say there are positive aspects to our situation, you do adapt to it if you develop these three key attributes – perseverance, patience and most importantly, ACCEPTANCE. I won’t say these are responsible for my longevity (that’s just down to good fortune), but they have made the last seven years bearable.

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Out of the Office: PatientsLikeMe team spreads the word for Lung Cancer Awareness Month

Posted November 12th, 2014 by

Hi all! I’m Kara, a member of the Community team at PatientsLikeMe and the moderator for our lung cancer community. November is Lung Cancer Awareness Month, and what better way to kick it off than to join a fantastic group in raising awareness for this often overlooked condition. Along with some fellow PatientsLikeMe staffers — and little Hugo, our French Bulldog mascot for the day — I recently had the pleasure of walking at the LUNGevity Foundation’s ninth annual Breathe Deep Boston 5K Walk on Nov. 1, 2014.

Rain and winds couldn’t keep us away from Carson Beach in South Boston that Saturday morning as we laced up our sneakers to join Boston area survivors and families as they walked to show their support for those living with lung cancer and honor loved ones who are no longer with us.

Bill Shields, WBZ-TV reporter and Boston area resident, emceed the event. Shields is a lung cancer survivor himself and shared his personal story with the crowd. By far, the biggest highlight of our day was hearing the many touching stories, whether it was Shields or other advocates speaking to the crowd, survivors sharing stories huddled over hot cocoa or loved ones proudly displaying their personal motivations for walking emblazoned on “I walk for _______” t-shirts or in stories written along the walls of the Sign-In tents. Check out some additional photos from the event on LUNGevity’s Flickr account.

Walking in the Breathe Deep 5K was just one small way to do our part to help shine a spotlight on lung cancer, show our support for survivors and help improve research funding for future patients. Everyone was out, not just supporting a great cause, but showing the power of people working together. This camaraderie and dedication to change is something I feel privileged to see in our growing lung cancer community on PatientsLikeMe, where members are working every day to raise awareness, share experiences to advance medical research, and help one another live better, together.

PatientsLikeMe member KaraSmith

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Raising awareness on Veteran’s Day

Posted November 11th, 2014 by

Right now, there are almost 22 million American veterans living in the United States, and every one of them has a story to tell. So today, we’re honoring their service by raising awareness for life after the military.

Like many others who are living with chronic conditions, the injuries our military men and women sustain are not always visible. Thousands of veterans are affected by post-traumatic stress disorder (PTSD), 30,000 have been diagnosed with a traumatic brain injury (TBI) since 2000 and many others are living with depression. Sometimes their symptoms don’t even manifest until many years after their service.

These eye-opening statistics are why we’ve recently announced a new multi-year collaboration with One Mind to help the millions of people worldwide who are experiencing post-traumatic stress traumatic brain injury, or both. We’ll work together to expand and enhance the PatientsLikeMe online registry experience for people with these conditions, to provide better resources for day-to-day living, and to capture more patient-reported data for research.

If you’re looking to learn more about US veterans, head to your nearest book store and grab a copy of “For Love of Country,” Howard Schultz’s and Rajiv Chandrasekaran’s new book (just released on November 4). Check out the video synopsis below:

 

There’s also the Concert for Valor today – it’s a free live event that is being organized on the National Mall in Washington, D.C. for veteran’s awareness. If you can’t make it in person, tune in on iHeartRADIO.

If you’re a veteran living with PTS or TBI, you can find others and connect to people who understand what you’re going through on PatientsLikeMe. There are more than 4,000 of members in the Veterans Forum, and every day, veterans are learning more about their health and the best ways to cope. Share a bond, and live better, together.

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Getting to know our 2014 Team of Advisors – Becky

Posted November 10th, 2014 by

So far, we’ve introduced you to two members of the PatientsLikeMe Team of Advisors – Dana (bipolar II) and Lisa (Parkinson’s). Today, say hello to Becky, a retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer.

About Becky (aka Rebelor)
Becky is a former family nurse practitioner, medically retired from military service. Used to a life in service, Becky is always prepared to get up and go, so when we called upon her to participate in the Team of Advisors, she was ready! When describing her journey with epilepsy, Becky said her initial complex partial seizures felt like divine intervention—she was waiting for the big answer or revelation, but the seizure would end just before discovery. Unfortunately, her journey with epilepsy collided with a journey with breast cancer, but she’s three years out of treatment and doing great. Becky uses her GI Bill to study philosophy, religious studies and creative writing.

Becky’s view on patient centeredness
Becky believes patient centeredness is the “holistic consideration of a person beyond gender and race. The cultural, spiritual, situational picture of the test subject.”

Becky on being part of the Team of Advisors
“Being a member of a meaningful team is time well spent. I can still contribute in some way to the greater good. It means that there are still things I need to do and be a part of despite my challenges. For anyone who has an illness or disability, you have to widen your world to help others. That is what ultimately will help you. When I was at my very worst, my husband told me I needed a new hobby. I was in medical offices 2-3 times a week, and now it is once a month. That is progress I can see!”

Becky’s military background
“I’m a retired Flight Nurse and started my military career in 1976 as an Intelligence analyst in the U.S. Army. I was initially assigned to Fort Bragg in the 7th Special Forces Group and went to jump school at Fort Benning in September of 1976. I made a total of 16 training jumps between school and my 3-year enlistment. I left the Army and started a family, but returned to the Air Force Reserve in Tampa as a Flight Nurse. I deployed in support of Hurricane Hugo, Desert Shield and Desert Storm, where I worked in the Aeromedical Evacuation Control Center in Riyadh, and then in this faraway location in a Mobile Aeromedical Staging Facility.

In 2003 I was activated and deployed to Europe as the Director of Operations for all aeromedical evacuation from OIF and OEF. It was an enormous job that took me from England to Germany, Spain, Italy and Kuwait. I flew 300 missions on the C-141 and C-17, moving 10,000 patients from forward areas to the U.S. After my return to the U.S., I had to return to my civilian job as a Family Nurse Practitioner. It was very difficult to manage the deployments and military career with my civilian career. My last 5 years in the military I worked at USSOCOM as a Family Nurse Practitioner and the chief of the clinic. 25 years of service. I was medically retired from the Air Force after I started having seizures in 2008. I am an alumnus of the Wounded Warrior Project, and my husband is the President and CEO of America’s Warriors Partnership.

As a female veteran, I am very much concerned about how we handle multiple roles, including transitioning to the civilian world and managing health and relationship issues. I am now using my GI Bill to return to college. Because of my epilepsy and breast cancer that followed, I have noticed a significant decline in my memory and cognition. I am using this opportunity to return to the academic world as a neurocognitive therapist. I’m not sure it is working, but it is challenging me.”

Becky’s passion for Veteran’s issues
“My passion with veteran’s issues is to connect with anyone who has served honorably and is in need of some support. Sometimes, we just need a little drill sergeant telling us to stand tall and carry on. Most of the veterans I know are silent warriors who have successfully returned to their communities and grown into new lives, taking with them the lessons of military service and training. There are some who have been injured in some way or are ill that need extra support, and that is where the Augusta Warrior Project or many other veteran support organizations can be very helpful.

The VA is not equipped to mentor and coach veterans through the turbulent times of life in the same way that many organizations can, but my belief in holistic healthcare is totally ingrained and I know it works. There has to be continuity and someone who understands the system and you. That is why I believe in the advocacy and support offered by some community based veterans programs like the Augusta Warrior Project, the Care Coalition at USSOCOM, the Wounded Warrior Project. They have to be comprehensive in their approach to advocate for a veteran, educate and assist them through school, ensure they have access to health resources and help them become successfully employed. All of this takes an all-knowing mentor over time! The benefits are there, they just aren’t user friendly!”

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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Recognizing diabetes in America

Posted November 7th, 2014 by

If you’re from the United States, chances are you know someone with diabetes – according to the American Diabetes Association (ADA), nearly 30 million Americans are living with diabetes, and many of them haven’t been diagnosed yet. That’s why November is American Diabetes Month. It’s all about raising awareness for both type 1 and 2 diabetes and educating everyone about risk factors, symptoms, healthier lifestyles and more.

Diabetes affects different people in different ways. For those living with type 1, the body doesn’t make enough insulin. And for people diagnosed with type 2, the body cannot use insulin properly. Type 1 is typically diagnosed in children, teens and early adults, while type 2 can be developed at any age. Check out the CDC’s infographic on the left to get a snapshot of diabetes in the United States.1

Managing blood sugar is a part of living with diabetes, and to help foster awareness, the ADA has created a “America Gets Cooking to Stop Diabetes” campaign and designated each day of the week for a specific activity. It’s a great way to get involved – check out the factsheet here.

If you’re sharing about American Diabetes Month on social media, add the #StopDiabetes and #AmericaGetsCooking hashtags. And if you’ve been recently diagnosed, visit the type 1 and type 2 diabetes communities on PatientsLikeMe – more than 17,000 people are sharing their experiences in the forum.

 

 

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1 http://www.diabetes.org/diabetes-basics/statistics/cdc-infographic.html


The Theory of Everything

Posted November 6th, 2014 by

Between the Ice Bucket Challenge and movies like “You’re Not You” (about a classical pianist who is diagnosed with ALS), there has been a ton of awareness going on for ALS, with many efforts focused on the personal stories of people living with the neurological condition. And this month, ALS is being spotlighted again in a biographical movie coming out very soon.

“The Theory of Everything” is about the life of renowned physicist Stephen Hawking, who has been living with ALS since the 1960s. Despite being given a grim diagnosis, he defied all odds and became one of the leading experts on theoretical physics and cosmology. Stephen Hawking’s story reminds us of the reality of ALS, but is also an inspiration to all who are living with motor neuron disease.

The movie premieres on November 7th in the U.S. – check out the trailer below.

 

As many out there might already now, movies like “You’re Not You” and “The Theory of Everything” hit close to home for the PatientsLikeMe family. In 1998, Stephen Heywood, the brother of our co-founders Ben and Jamie, was diagnosed with ALS. Their experiences – as a patient, as caregivers, and as a family led to the beginning of the online community patientslikeme.com.

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What’s your epilepsy story?

Posted November 3rd, 2014 by

That’s what everyone’s asking this November during National Epilepsy Awareness Month.  If you’ve been diagnosed, or know someone living with epilepsy, put on your brightest purple clothes and start raising awareness for this neurological condition.

What are three things you need to know about epilepsy? 1

  • It’s a condition that affects the nervous system and causes seizures
  • A seizure is a disruption of the electrical signals between brain cells (neurons)
  • People are diagnosed with epilepsy after they experience two or more unexplained seizures separated by at least 24 hours

Epilepsy affects about 50 million people around the world, including over 2 million in the United States alone.2 3 Although there is no cure for epilepsy, seizures can be managed and suppressed through medications, non-medication treatments such as vagus nerve stimulation, or surgery.4 5 6

To help raise awareness this month, the Epilepsy Foundation of America (EFA) has organized a series of short online videos that feature people from all over the U.S. sharing their experiences with epilepsy. Watch one of them below and check out the rest on the EFA’s “Story Days” campaign page.

 

Los Angeles

Don’t forget to check out Letitia’s video, too – she’s a PatientsLikeMe member who has been living seizure-free after she learned about an epileptologist through her community. And if you’ve been diagnosed, reach out to the more than 9,000 PatientsLikeMe members living with epilepsy.

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1 http://www.epilepsy.com/learn/about-epilepsy-basics

2 http://www.who.int/mediacentre/factsheets/fs999/en/

3 http://www.cdc.gov/epilepsy/basics/fast_facts.htm

4 http://www.uptodate.com/contents/overview-of-the-management-of-epilepsy-in-adults?source=search_result&search=epilepsy&selectedTitle=3~150

5 http://www.uptodate.com/contents/evaluation-and-management-of-drug-resistant-epilepsy?source=see_link

6 http://emedicine.medscape.com/article/1184846-treatment#aw2aab6b6b2


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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