15 posts from March, 2015

“ALS is not for sissies.” – PatientsLikeMe member SuperScout shares about her journey with ALS

Posted March 30th, 2015 by

That’s what SuperScout likes to tell people when explaining her personal motto. She was diagnosed in 2009, and in a recent interview, she explained how she takes her life one day, and sometimes one hour, at a time. In her interview, she broke down what goes on during a typical visit to her ALS clinic, and shared how technology has been simultaneously frustrating and extremely helpful. Learn about her journey below.

When did you first experience symptoms of ALS?

In August 2008, I was attending a Girl Scout event. As we recited the Promise, I noticed my fingers weren’t making the sign correctly. Over the next few months, I began to lose the fine motor skills in my right hand. Writing was hard, & I started using my left hand for most things. I thought I had some form of carpal tunnel. I had NO pain, so I wasn’t concerned. In December 2008, I went to my family doctor for my annual check-up. I told him my problems & he sent me for an electroencephalogram (EEG). That began the series of tests that eventually led to my diagnosis in April 2009.

How did you feel after being officially diagnosed? And what was the first thing that went through your mind?

I don’t think I will ever forget that day. I suspected something unusual was going to happen because the technician at my second EEG commented that the neurologist must find my case interesting because normally, it’s difficult to get an appointment with him. He entered the exam room, sat down, and said, “I have bad news for you. You have Lou Gehrig’s Disease.” I was stunned, and asked if it would affect my longevity. He said yes, but couldn’t tell me how much. He asked if I had any questions, but I didn’t because I didn’t know much about it. Sure, I had heard of it, but didn’t know what it would do to me. I went home, and looked on the Internet for information on ALS. It was scary. The first thing through my mind was how it would change my life and that of my family. I was used to doing for others, now they would need to do for me.

You tell people “ALS is not for sissies.” Can you elaborate on that?

A sissy is defined as someone who is timid or cowardly. No one who has ALS can fit that definition. We all know it will shorten our life, and rob us of many functions we once took for granted. I really like the PSA Angela Lansbury did for ALS in 2008. She’s sitting on a stool, and a gun is fired. As the bullet races toward her, she describes what ALS does to the body, and ends by saying “There’s nothing you can do to stop it.” She asks for donations for the ALS Association (ALSA) stating that with this help those with ALS can do this: She rises and avoids the oncoming bullet. We all see the bullet, yet can’t do anything to stop it. Unlike other serious diseases, there are NO options for a treatment that will cure this disease that’s been described as horrific. However, every day we People with ALS (PALS) are fighting the daily battle to stay positive. Sometimes, it’s easy, sometimes, it’s hard. You take it one day at a time, or even just one hour at a time. That makes us BRAVE, and not sissies.

Take us through a typical visit to your ALS clinic – what’s the experience like?

Every 3 months, I visit the ALS clinic at Penn State Hershey Medical Center. Once my weight is checked, I’m taken to an exam room, then the team of specialists each stop in to see me. In addition to the neurologist, I see a respiratory therapist, nurse, ALS representative, MDA representative, speech therapist, dietician, occupational therapist, physical therapist, social worker, & a pastoral care minister. They each make recommendations to help me have the best quality of life with ALS as possible. My family members are asked if they have any needs. Each room has a sign – “Have we answered all your questions?” About 1 week after my visit, I receive in the mail a summary of my visit with their recommendations. Prior to the visit, I also complete a Quality of Life survey, similar to the one on this website. Although lengthy (around 3 1/2 hours), I enjoy my visits because each person makes me feel important and they truly care about me.

How has technology helped you with your communication?

When I began using my Eyegaze Edge, I found it frustrating, but gradually got better at not moving my head and was able to be successful. Now, it is my sole means of communication. Before my caregiver arrives in the morning, I type out for her what I want for my meals, what channels I want to watch on TV, and any special information. My son says I sound like Charlie Brown’s teacher when I talk, so using my device is a necessity if I want to communicate. We even take it to Sunday School, so I can participate in our class discussions. My most favorite thing to do is connect to the internet. Sending emails is easy, and I go on Facebook, play games, read, Skype, shop, and do whatever I’m in the mood for. Once, when the camera broke, I was without it for a few days and I really missed it. I wound up grunting “Yes” or “No” to questions which was frustrating. Using technology to connect to others makes me feel I still have a purpose in life, and I have something worthwhile to contribute.

Finally, what’s the most positive surprise you’ve learned while living with ALS?

The most positive surprise I’ve learned while living with ALS is that I have more people thinking about me, and supporting me with their prayers, than I expected. I learned this during the ALS Ice Bucket Challenge. I began to see videos posted on my Facebook timeline of people participating in the Challenge in my honor. It warmed my heart to see them. They featured friends, former work colleagues, and some fellow Girl Scout volunteers. Many said how I’ve inspired them with my smile. It was never my intention to be an inspiration, but just to cope with ALS the best way I knew, with my faith in God and a sense of humor. Due to the Ice Bucket Challenge, the world now knew more about ALS, and money will be used to find a treatment and cure for ALS. I feel hopeful for the first time since my diagnosis.

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Getting to know our Team of Advisors – Deb

Posted March 27th, 2015 by

You’ve been introduced to five members of the PatientsLikeMe Team of Advisors so far: Karla, Emilie, Becky, Lisa and Dana.

This month, meet Deb, a freelance medical writer who was diagnosed with multiple sclerosis (MS) in 2009. Learn about her journey and what being a part of the Team of Advisors means to her. 

About Deb (aka ruby1357):
Deb has spent most of her professional life as a freelance medical writer and editor. Over the years, she has worked with many health and medical organizations. Currently she works in cardiac surgery research for a major hospital system in the Washington, DC, metropolitan area. Deb’s primary professional interest has always been patient education. She believes that “knowledge is power”―that clear and accurate information can ease patients’ fear and uncertainty when faced with a serious diagnosis, that anyone is capable of understanding even the most complex research if it is presented appropriately, and that information doesn’t have to be dumbed down for patients to understand it.

Deb was diagnosed with MS in 2009. Her passion is dressage, and she credits her horse, Gwen, and riding as the most important and effective “treatments” for her MS symptoms.

Deb on patient centeredness:
“I feel fortunate that, because of my work, I have been able to see clinical research from the perspective of both the patient and the researcher. I have worked with and for many organizations, researchers, and physicians over the course of my career, and I have found that, ironically, the patients themselves are often invisible in the research process. If patients are thought of as “cases” rather than as real people, and if patients don’t understand what is being done and why, then the research effort has lost what should be its central purpose.

The story of how I came to be diagnosed with MS illustrates some important points that I feel are related to patient centeredness and the work of PatientsLikeMe’s Team of Advisors.

On opening day of show season in 2009, I found for some reason that I couldn’t ride very well. Everything was off, and my body felt very strange. Embarrassingly, that day I received the lowest scores of my riding career! Days later, I found myself in the office of a neurologist, who off-handedly ran down a laundry list of differential diagnoses, ranging from a pinched nerve or Lyme disease (the latter is common among horse people) to Parkinson’s or multiple sclerosis. After weeks of anxiety and a multitude of tests, the same doctor casually informed me over the phone that “it looks like you have MS.”

At age 52, I couldn’t believe my ears, especially since my ex-husband had been diagnosed with MS many years before, very early in the course of our marriage. Back then, there wasn’t an MRI machine around every corner. It took 5 years after his first attack for him to be diagnosed. At that time, I was working for a major medical specialty organization, so I went to the library (no one had computers yet) and found everything I could about MS. Then we both started reading. At a time when the official slogan of the MS Society was “MS: The Crippler of Young Adults,” we learned that having MS didn’t mean you would necessarily end up in a wheelchair. The information we gathered reassured us. He went on to lead a totally normal life during the 10 years of our marriage.

I see these two incidents as related in very important ways. Having accurate information about MS kept my ex-husband and me from fear and despair. And the casual manner of the neurologist who gave me the MS diagnosis served as a perfect example of how NOT to interact with patients. Both incidents relate to how important it is for both researchers (who publish their results, which eventually may make it into patient information materials) and clinicians (who should take into account how it feels to be on the other end of the conversation) to keep the “end user”―the patient―at the forefront of everything they do.”

Deb on being part of the Team of Advisors:
“Being a part of the ToA has been a profoundly rewarding experience. I have made friends that I know I will keep once our terms are over. Like my colleagues on the ToA, I am deeply grateful to have the opportunity to be heard, without condescension, as a person experiencing a disease and its effects, and to have an opportunity to have a say in how research is conducted.

PatientsLikeMe has as its mission nothing less than changing how research is conducted, and I am excited and honored to be even a small part of that. There is a long-standing divide between the researchers who conduct clinical trials and the practitioners who provide health care to patients. Too often, patients are lost in the middle. The research/clinical divide has long needed a third party to bridge the gap. That third party is the patients themselves. By starting at this common ground—the patients whose lives are affected by both research and clinical practice—PatientsLikeMe is making important strides in bringing together these traditionally divided camps for a unified purpose: to better the health and quality of life of real people.”

Deb on MS research:
“Like my fellow Advisors and PatientsLikeMe itself, I believe that much can be learned from patients’ experiences, and this information should be used to design research studies. My own experience serves as an example of this.

In the weeks and months after my initial diagnosis, I found that movement was vitally important. MS is, after all, a movement disorder. My fellow horsewomen rallied to my side, lending me their quiet mounts to ride until my symptoms abated and I could safely ride my own high-spirited (to put it politely!) mare again. Those women―and the horses themselves―kept me moving.

When my current neurologist first met me, she told me that, having looked at my MRIs before our visit, she was amazed at how well I was doing. Although I don’t have scientific evidence for it, my belief is that my riding has kept the disease from progressing further than it has.

This is an example of how patients’ experiences can inform research. To date there are maybe a dozen studies on the effects of sustained physical exercise on MS disease progression. There need to be more clinical trials in this area, as well as in other chronic conditions, that are based on patients’ actual experiences. Those experiences―though anecdotal―are a treasure trove of possible study questions for clinical research.”

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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“Focus on making small but meaningful changes” – an interview with Amy Campbell

Posted March 25th, 2015 by

Amy Campbell is a registered dietitian nutritionist and certified diabetes educator at Good Measures, a company that combines the expertise of dietitians with state-of-the-art technology to help people improve their eating and exercise habits. Before joining Good Measures, Amy worked for almost 20 years at Joslin Diabetes Center, an internationally recognized diabetes treatment, research and education institution.

Amy, you have an impressive background – former nutritionist at Joslin Diabetes Center and co-author of 16 Myths of a Diabetic Diet, just for starters. As a certified diabetes educator, you’re aware of the media buzz around the new cholesterol guidelines. What does this mean for people with type 2 diabetes – and those at risk for it?

Cholesterol guidelines have always been somewhat confusing. The Dietary Guidelines Advisory Committee, an expert panel that provides recommendations to the Department of Health and Human Services and the Department of Agriculture, has done their homework and really examined the evidence around dietary cholesterol. The good news is that, for the first time, the committee is really downplaying the role of dietary cholesterol. In other words, for most of the population, eating foods that contain cholesterol has little if any effect on blood cholesterol levels. This is great news!

Whether or not eating eggs affects our cholesterol levels is awfully fuzzy for many people. As both a dietitian and a health professional advisor for the Egg Nutrition Center, this probably comes up a lot. What’s the latest wisdom?

For many years, health professionals, including doctors and dietitians, advised their patients to limit or even avoid eggs due to their cholesterol content. But a number of important studies have shown that dietary cholesterol (cholesterol found in food) has little effect on blood cholesterol levels. In fact, the Dietary Guidelines Advisory Committee have dropped their recommendation that Americans limit their intake of cholesterol from foods, such as eggs and shrimp.

The data is a little less clear in terms of how dietary cholesterol might affect people who have type 2. But again, there’s no need to cut eggs out of a diabetes eating plan. In fact, if anything, eggs are a great addition because they are carbohydrate-free, rich in protein and low in saturated fat. Eggs provide many other important nutrients, as well, such as iron and vitamin D. Plus, they’re budget-friendly nutrients, as well.

Any specific suggestions for foods to eat or avoid if you want to reduce the level of “bad” (or lousy or LDL) cholesterol?

Although there’s some controversy surrounding saturated fat and how “evil” it really is, studies do show that this type of fat, found in red meat, cheese, whole milk and butter, for example, can raise LDL cholesterol levels. However, there are foods that can lower LDL cholesterol. These include foods high in soluble fiber, such as oatmeal, oat bran, beans, apples and pears. And foods rich in omega-3 fatty acids, like salmon, tuna, sardines, walnuts and flax seed can lower LDL levels as well.

Type 2 diabetes seems to be one of those conditions that’s closely related to lifestyle. Along with tips on nutrition, what else do your readers want in helping to manage their diabetes?

I’ve found that people who have type 2 diabetes want simple but straightforward suggestions on what they can do to live a healthy life with diabetes. Making changes to one’s eating plan can be difficult (we form our eating habits early on!), so practical pointers around food shopping, making nutritious meals and controlling portions are always helpful.

In addition, because getting and staying physically active is so important for people with diabetes, guidelines on how to fit activity into one’s daily life (like walking on your lunch break, for example, or using a resistance band while watching TV) are invaluable. Dealing with a chronic condition day in and day out can be stressful. Finding ways to reduce stress and to take time to relax is important. Finally, information is power. I encourage people who have diabetes to check their blood sugar levels – if not every day, at least a few times per week – to get a better understanding of how their food, activity and medications affect their diabetes control.

What about sleep? Have patients indicated that the condition seems to be associated with insomnia or sleep apnea?

Sleep is a big issue when it comes to diabetes. First, poorly controlled diabetes can keep a person from getting a good night’s sleep, especially if they’re getting up frequently to use the bathroom or get something to drink. Second, having type 2 diabetes increases the risk for sleep apnea, a serious condition whereby a person stops breathing for short periods of time while sleeping. And third, complications from diabetes, such as neuropathy, can also prevent a person from getting restful sleep.

Restless leg syndrome is another condition that interferes with sleep, and this condition is more common in people who have diabetes than in people who don’t. A lack of sleep can increase the risk of heart disease, obesity and even type 2 diabetes. Sleep deprivation can also do a number on your immune system, meaning that you’re more likely to get sick. Sleep experts recommend aiming for about 7 to 9 hours of sleep a night.

So, if you could come up with three top bits of advice for people who live with – or want to avoid – type 2 diabetes, what would they be?

Here’s my advice: First, focus on making small but meaningful changes to your eating plan (if you need to!). You don’t need to cut out carbs or go on some stringent diet. But aim to eat plenty of “whole” foods, including vegetables, fruits, whole grains and lean protein foods. Limit processed and fast food as much as possible.

Second, be active. If going to the gym isn’t for you, no worries. Go walking. Climb stairs. March in place when you watch television or talk on the phone. Physical activity is so important to help with blood sugar control. And third, take care of yourself. This means getting enough (but not too much) sleep, managing stress and making sure you have support from family, friends, co-workers or even an online community.

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Are you at risk for diabetes? Take the test

Posted March 24th, 2015 by

Listen up: if you’re living in the United States, there’s about a 1 in 3 chance you’ll develop diabetes over the course of your lifetime. But there are many ways you can lower your risk, which is why the American Diabetes Association (ADA) has recognized March 24 as Diabetes ALERT! Day. Today is about raising awareness for not only those living with diabetes, but those who can still make lifestyle changes to avoid developing it.

Diabetes is one of the most common health conditions in the United States – in 2012, over 29 million Americans (almost 10 percent of the U.S. population) had some form of diabetes (learn about types of diabetes here).1 It’s also estimated that in 2010, 86 million citizens aged 20 or older had prediabetes, which if left untreated, is likely to develop into type 2 diabetes in less than 10 years. Check out the infographic below for a quick snapshot of diabetes in the U.S., courtesy of the ADA and CDC.

Today, take the ADA’s type 2 diabetes risk test and share it with your friends, family and colleagues. It only takes a few minutes to answer the multiple-choice questions – you never know what you or someone else might discover from the results. And don’t forget to highlight your participation on social media through the #DiabetesAlert hashtag.

Many PatientsLikeMe members are living with diabetes – in fact, over 16,000 with type 2 and over 2,000 with type 1. If you’ve been diagnosed, join and share your experiences with the community.

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1 http://www.diabetes.org/diabetes-basics/statistics/


“I am not alone in this” – PatientsLikeMe member Rikwood55 shares his journey with lung cancer

Posted March 23rd, 2015 by

New member (and New Zealander) Rikwood55 was diagnosed at age 58 with non-small cell lung carcinoma (stage 4), and he said he joined PatientsLikeMe in the hope of connecting with people on the same or similar lung cancer immunotherapy treatments. Rick took part in a clinical trial, and is now tolerating the immunotherapy treatment well. His scans are looking good, and he sums it up this way:

“Five rounds of Carboplatin Chemo was hard going, as it is for everyone. Now more stability has returned and with it, hope for the future.”

Read Rick’s interview below and share your own experiences.

Tell us a little bit about yourself, Rick.

I am Rick, and I was diagnosed at age 58 with NSCLC stage 4 metastasis. I am a New Zealand-born resident currently receiving immunotherapy treatment in a clinical trial every 3 weeks at Auckland Hospital. I have received 14 treatments to date. Scan results have been good and I am tolerating the treatment well. I have joined PatientsLikeMe in the hope of connecting with people on the same or similar lung cancer immunotherapy treatments. Please, no clinical specific info, which would in any way compromise study results. Let’s talk about living day to day…I think you’ll know what I mean.

You were diagnosed about 2 years ago – what went through your mind after your diagnosis?

Diagnosis day was a tough day. Mentally paralyzing. No soft landing. I dealt with it as best as I could. Fortunately my beautiful wife was there for me. 

You’re a brand-new member of PatientsLikeMe – welcome! What do you think of the community and site so far? 

Thank you for your ‘new member’ welcome to PatientsLikeMe. What I have seen so far, this site looks to me to be very impressive, I found the section on sleep very reassuring. Insomnia is a big issue for me. I see now from your research data that I am not alone in this.

On your profile, you’ve noted that one of your interests is in clinical trials. What about clinical trials makes you passionate about them?

I do not think I am passionate about clinical trials per se. However, I am very enthusiastic about the immunotherapy study treatment that I am fortunate to currently be on. It has given me hope. A sense of hopelessness was never far from my mind in the first year after diagnosis. Five rounds of carboplatin chemotherapy was hard going, as it is for everyone. Now more stability has returned and with it, hope for the future.

Finally, what is one thing you’ve learned over the past two years since your diagnosis that you’d like to share with the lung cancer community?

Maybe one small way that I can try and say thanks to the cancer researchers, biotechnicians, study administrators and clinical care staff is to show support and encouragement for the groundbreaking work they are doing. They deserve all the flag waving acknowledgment possible for giving me back hope.

To paraphrase Mel Bernstein/Harris Yulin in Scarface, (1983), “Everyday above ground is a good day.”

Cheers!

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MARCHing together for myeloma awareness

Posted March 20th, 2015 by

There’s a lot of awareness going on in March. So far, we’ve learned more about sleep conditions (how pain can increase sleep debt), multiple sclerosis (the myths and facts) and brain injury (how it might be more common than you think). Today, we’re shining a spotlight on myeloma, a type of blood cancer that affects more than 750,000 people worldwide.1

You can add to your knowledge during Myeloma Awareness Month (MAM), and educate your friends and family about the condition. Awareness is contagious.

Here are the basics about myeloma:

  • Myeloma is the second most common blood cancer in the world
  • It begins in plasma cells (white blood cells that are part of the immune system) and eventually collects in bone marrow
  • When myeloma collects in more than one location in the body, it is called “multiple myeloma”
  • Common symptoms include bone pain, anemia and extreme fatigue

It’s estimated that over 24,000 new cases of myeloma were diagnosed in 2014.2 For these people and everyone living with myeloma, here’s how you can get involved in raising awareness:

As the IMF says, let’s MARCH together for myeloma awareness this month. If you’ve been diagnosed, read about PatientsLikeMe member AbeSapien’s journey with multiple myeloma in his interview. And don’t hesitate to reach out to the more than 1,600 PatientsLikeMe members living with multiple myeloma.

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1 http://mam.myeloma.org/educate/

2 http://seer.cancer.gov/statfacts/html/mulmy.html


Myths vs. facts about multiple sclerosis

Posted March 18th, 2015 by

Stop! What do you know about multiple sclerosis (MS)?

That’s the question we’re asking during MS Awareness Month. We’ve heard from many community members that people don’t always get what it’s like to live with MS, and that there’s wrong information out there. So as part of ongoing awareness efforts, we created shareable photos that will hopefully dispel some of the myths surrounding the neurological condition.

There are 13 shareable infographics in total – click here to view the gallery.  Don’t forget to use the #MSawareness hashtag when you post on your Facebook or Twitter. Let’s kick things into high gear and start dispelling myths about MS this month so that everyone is armed with better information all year round.

What’s the community saying?

“The stigma associated with MS far outweighs any benefits that come from awareness, from my personal experience. To be very honest, no one cares unless it happens to them, and people perceive being sick as a weakness”
-MS forum thread

“I have only been offended two times in 20 years by strangers. Family, now that’s a different story – stigma runs rampant there when it comes to MS.”
-MS forum thread

“A society that attaches a stigma to our disease when people fear it or don’t believe it exists, then discriminates against us instead of trying to imagine what our lives are like.”
-MS forum thread

Already a member? Awesome! Click on any of the links above and join the conversation. Not a member? No problem. Sign up for free here and then add your thoughts. Every voice is welcome.

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You are not alone in brain injury

Posted March 16th, 2015 by

#NotAloneinBrainInjury. That’s the overarching theme of the 2015 Brain Injury Awareness Month, organized by the Brian Injury Association of America (BIAA). 2.5 million Americans survive a traumatic brain injury (TBI) each year, and and it’s time to raise awareness for the 5.3 million people currently living with a brain injury.1

In addition, Wednesday, March 18 is “Brain Injury Awareness Day.” There are many different ways to get involved – you can share one of six promotional posters created by the BIAA, listen to several public service announcements and even get involved with the TBI Portrait Project.

Finally, don’t forget to share your support for TBI awareness on social media through the #NotAloneinBrainInjury hashtag. Just click on the Twitter icon below or spread the word on your Facebook page.

Our co-founder, Jamie Heywood, said it best when discussing PatientsLikeMe’s recent partnership with One Mind, a non-profit organization dedicated to benefiting all affected by brain illness and injury:

“We are both of one mind when it comes to the challenges of living with and researching these understudied and largely misunderstood conditions. Our partnership with One Mind and the individuals dealing with PTS and TBI will provide insights about effective treatments from people in the real world, and drive new understanding about gaps in care. It will also provide a new resource where people are empowered to help themselves as they learn how to live better with their condition.”

If you’ve been recently diagnosed with a TBI, join the more than 1,500 PatientsLikeMe members living with different traumatic brain injuries. The community is ready to answer any and every question you might have.

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1 http://www.biausa.org/brain-injury-awareness-month.htm


Hacking our way to new and better treatments with integrated biology

Posted March 13th, 2015 by

When it comes to discovery and healthcare advancements, too many of us are more focused on the processes we use today rather than at a first principals level looking and what’s possible. We are a sector desperately in need of disruption to accelerate the generation of knowledge and lower the costs of developing new treatments for patients today. We need to ask what are the best ways to generate actionable evidence that can benefit patients, clinicians, payers and regulators.

We need to take an integrated approach to biology and treatment discovery.

Large-scale approaches like genetics, the biome, metabolomics, and proteomics are coming down in price faster than the famous Moors law that has driven computer improvements. These tools are beginning to allow us to understand the biological variation that makes up each of us. This is the technology I used at ALS TDI; the organization I founded, to help learn about the early changes in ALS. This emerging technology needs to be met with well-measured human outcomes.

PatientsLikeMe is working to build that network. Our goal is to be a virtual global registry with millions of individuals sharing health information, translated into every language and normalized to local traditions fully integrated into the medical system so it’s part of care and incorporates information from the electronic medical record, imaging, diagnostics and emerging technologies for interrogating biology.  We are doing this because to understand the biology of disease we needed to understand the experience of disease with the patients as true research partners.

This isn’t just about integrating biological methods to forge discovery. You can’t just consider the science; you also have to consider the person. No two health journeys are exactly the same. With integrated biology, you have to look at the whole person: their social interactions, socioeconomic status, comorbities, environmental impacts, lifestyle factors, geographical location, etc. To accurately model a condition like ALS, or any of the other 2,300 conditions that PatientsLikeMe members are living with, we need to understand everything that can impact progression. We need to use those real-world patient experiences to inform and improve the drug discovery process.

There is much that needs to be solved to move from our current siloed approach to the integrated one and we have had the privilege of being involved in one of the most innovative. Orion Bionetworks brought together leaders from across the MS Field to develop an integrated model of the disease and they are now moving forward with an even more ambitious project.

They’re using computational predictive modeling to bring together different scientific methods and big patient data to find treatments that work and biomarkers that measure them to the people that need them faster. Said differently, they are hacking their way to treatments, because that’s the only way it’s going to work.

They’ve already got a validated model: Orion MS 1.0. And now they want to develop a new Orion MS 2.0 model. Learn more about their #HackMS campaign and how you can help.

We are highlighting Orion here because what they are doing is so innovative and worthy of support. I donate to ALS TDI, the institution I founded, because I believe in the mission and their approach. I also have donated to Orion because if we need to do anything in discovery we need to support the people that are trying to do it differently. What they are proposing is so innovative and powerful in its scale that it has the potential to redefine how we understand and treat MS. That’s why we are partners with them and it’s how we meet our responsibility to our MS patients to use their data for good.

PatientsLikeMe member JamesHeywood

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Give veterans access to the care they need

Posted March 11th, 2015 by

By Peter Chiarelli, retired U.S. Army general & CEO of our partner One Mind

As originally seen in the Washington Post

Soldiers listen as U.S. Secretary of Defense Ash Carter (not pictured) holds a question-and-answer session with U.S.military personnel at Kandahar Airfield in Kandahar February 22, 2015. (Jonathan Ernst/Reuters)

 

The high-grossing film “American Sniper” was nominated for an Academy Award for best picture, but it deserves higher honors for highlighting one of the greatest causes of casualties in our recent wars: post-traumatic stress (PTS).

The story of Iraq war veteran Chris Kyle, who was killed by a Marine veteran suffering from the effects of PTS and other mental-health problems, makes a powerful case that PTS needs to be a higher national priority. (You’ll note that I don’t include the word “disorder” at the end of PTS; the longer PTSD label actually discourages some service members from seeking treatment.) Since “American Sniper” debuted, Veterans Affairs and Defense Department leaders have been highlighting their programs for helping veterans diagnosed with PTS. But are those programs working?

In too many cases, the answer is no. Our PTS diagnostics remain crude, and no drugs have been approved specifically for treating the condition. Complicating matters, because of genetic and other differences among individuals, patients react differently to varying drugs and dosages. Finding the right mix can be a frustrating saga of trial and error. The wrong drug or dose can, if not caught in time, become a factor in other serious mental-health and behavioral issues, even including suicide.

It only makes sense that once Defense Department doctors identify an effective treatment for a service member, that same treatment should be available when the service member leaves active duty and moves to VA for care. More often than not, however, it is not.

The disconnect occurs because Defense has an all-inclusive drug formulary that allows clinicians to prescribe almost any medication approved by the Food and Drug Administration, while VA has a very limited formulary, primarily to control costs. Medically discharged service members who are given a 90-day supply of PTS prescriptions eventually must report to their VA medical facility for refills, where they are often denied — not for medical reasons but because the medications they rely on are not on VA’s approved list.

This is not a case of one prescriber issuing Bayer aspirin while another uses Saint Joseph. Service members whose symptoms are being controlled by specific anti-depressant, anti-anxiety or anti-psychotic drugs, as well as pain and sleep medications, are forced to give them up and search for a replacement — often a painful and dangerous process — simply because Congress has failed to require Defense and VA to harmonize their drug formularies.

Let me be clear: The problem is not that doctors within the two systems disagree over which drugs should be part of their formularies. Their hands are tied. They must operate within the rules set out by Congress.

Rather than repeating the laborious process of finding another drug that works, many veterans have told me they sought out private providers to fill their prescriptions, usually paying for their medications out of pocket. Imagine how they feel about VA when their first experience with the agency is a doctor telling them they cannot fill a prescription that has relieved their PTS symptoms for months or even years. In some cases, the veteran is not even given enough of the recommended drug to safely discontinue its use.

I have testified about this serious discrepancy, most recently as a member on the Military Compensation and Retirement Modernization Commission, and have discussed it privately with members of Congress. A few have said they will try to address the problem, but most have declined, citing the added cost to VA of a fuller formulary and the time the Government Accountability Office would require to determine the budgetary impact of such a change. Shouldn’t the long-term cost, danger and social impact of denying vital medications to veterans provide a sufficiently compelling reason for Congress to act?

The obvious solution is to include the same medications in both formularies. If this is not possible, Defense Department doctors should exhaust all the options available on VA formulary first before considering any drugs not covered by VA. If neither of these options can be adopted, Defense doctors should at least warn service members that their current prescriptions will be unavailable in the VA system.

This problem needs to be fixed immediately. A directive released by VA in late January seeking to address the problem without correcting the misaligned formularies contains too many loopholes and is totally inadequate. We need a solution, and not a patch. Chris Kyle’s death underlines the urgency of providing effective treatments for PTS. We can start by getting the Defense and Veterans Affairs departments on the same page.

Learn more about One Mind.

Read what the PatientsLikeMe community is saying about Peter Chiarelli’s article.


PatientsLikeMe Appoints Ed Godber as First Executive Vice President of Life Sciences Ventures

Posted March 10th, 2015 by

Industry Leader to Head up Patient-Focused Initiatives for Life Sciences Customers

CAMBRIDGE, MA., March 10, 2015— PatientsLikeMe today announced it has appointed Ed Godber as Executive Vice President of Life Sciences Ventures. In this newly created position, Ed is responsible for managing PatientsLikeMe’s life sciences business and bringing the patient agenda to the forefront of partners’ development and delivery operations. He reports directly to PatientsLikeMe CEO Martin Coulter.

“Our pharma, biotech and healthcare customers are asking us to guide and support their transition to a more patient-centric world, and to integrate the patient voice in all they do,” said Coulter. “Ed brings the perfect blend of skills to this mission. His patient-centered view and senior level industry, payer and healthcare experience will help our customers create even greater value for their patients.”

Ed has been advising and managing operations in numerous life sciences and healthcare companies for more than 20 years. Previously, he was the Chief Executive Officer of the London-based Health Labs Advisory Boards, where he was a strategic advisor to pharma, biotech, venture capital and nonprofit organizations. He also spent nearly five years at GlaxoSmithKline (GSK) as Senior Vice President, heading up access to medicines as part of the European Executive Team and exploring evidence innovation within the research and development division. In that position, he also co-founded a multi-million dollar external scientific collaboration on real world data.

Godber began his career in public health, strategic commissioning and policy research in the UK’s National Health Service (NHS) and has advised a wide range of transformational ventures, including the Bill & Melinda Gates Foundation and the Chatham House Working Group on Anti-Bacterial Resistance.

“I’ve long admired PatientsLikeMe for sparking a revolution in healthcare with its community- and science-based platform for patients,” Godber said. “As a patient who has benefitted so much from the way in which PatientsLikeMe works, I’m excited and honored to be part of a team that is helping life science companies realize their deep-seated desire to enable the patient voice to transform the discovery and development process.”

Godber is based in London. He holds a master’s degree in health economics from the University of York and a master’s degree in business administration from the London Business School.

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 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.


March is Multiple Sclerosis Awareness Month

Posted March 9th, 2015 by

Multiple sclerosis (MS) affects more than 2.5 million people worldwide, and in the United States alone, about 200 new people are diagnosed each week. Those are just a couple of the many reasons why the Multiple Sclerosis Association of America (MSAA) recognizes March as Multiple Sclerosis Awareness Month.

What more do we know about MS? Doctors are unsure of the root cause of the condition, but women are twice as likely as men to develop MS. Additionally, the farther away from the equator you live, the greater likelihood you’ll experience MS – overall, your lifetime chance of developing MS is about 1 in 1,000.1

Did you know that there are four different types of MS? Each one affects people a little differently.

  • Relapsing-remitting MS (RRMS) affects the large majority (85 percent) of MS patients, and this type features clearly defined periods when symptoms get worse and activity decreases.
  • Primary-progressive MS (PPMS) causes a clear progression of symptoms and equally affects men and women.
  • Secondary-progressive (SPMS) is a form of PPMS which is initially diagnosed in only about 10 percent of patients.
  • Progressive-relapsing MS (PRMS) is found in only 5 percent of MS patients, but these people have both clear relapses and a clear progression of symptoms.

So now that you know more about MS, what can you do to help raise awareness? Here are just a few of the ways the MSAA recommends:

  • Read one of the MSAA’s publications, including the recently published annual MS Research Update, which includes the latest developments in MS treatments and research.
  • Find and attend one of the MSAA’s educational events for people with MS and their care partners.
  • Register for Swim for MS, which encourages volunteers to create their own swim challenge while recruiting online donations.
  • Check out the Australian MS Society’s Seeing [MS] campaign, which features MS patients and photographers working together to visualize the invisible symptoms of MS.
  • Share on social media using the #MSawareness hashtag and MSAA profile badge.

If you’ve been recently diagnosed with MS, check out our MS patient interviews and blog posts, or join more than 38,000 people with MS at PatientsLikeMe.

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1 http://www.healthline.com/health/multiple-sclerosis/facts-statistics-infographic


A day in the life of Software Engineer Jacinda Zhong

Posted March 6th, 2015 by

In the last “A day in the life” post, Jonathan shared his story about his son Nolan’s hand injury. In case you aren’t familiar with the series, here’s the scoop. At PatientsLikeMe, we believe in the power of openness, and members frequently share about their health journeys and experiences with different conditions. And since they go above and beyond, the staff at PatientsLikeMe likes to share their own stories to help everyone get to know us, too.

In this edition, Jacinda, a software engineer on the PatientsLikeMe team, introduced herself and spoke about her role, her thoughts on health tech and her passions outside of work. Read her interview below, and don’t forget to check out other posts in the “A day in the life” series.

When did you first hear about PatientsLikeMe? What drew you to join the organization?

I heard about PatientsLikeMe through the Vice President of Engineering, Marcia Nizzari. She is a board member at the arts nonprofit Cantata Singers, which is where I used to work. After I heard about PatientsLikeMe and did some research, I was really drawn to the idea of an application that helps people, instead of technology for technology’s sake. I was also very moved by the founders’ story, and believe that if the leadership has a strong personal connection to the mission, the company becomes more mission-driven, versus financially-driven, which is unfortunately the case with so many technology companies.

Tell us a little about your role as a software engineer. What are some things you’re working on?

I have been working on many different parts of the website, such as quick start and the condition reports. I’ve really enjoyed being able to work in all levels of the stack – from database queries to JavaScript on the client side. I think that is something really great about the PatientsLikeMe engineering team, where the majority of the engineers work on the front and back end. This allows engineers to develop a wide skill set and to contribute to all parts of the site.

You’re one of PatientsLikeMe’s newest employees – in your first few months, what has really stood out to you about PatientsLikeMe?

Similar to what I said above, I really like that PatientsLikeMe is so mission-driven, and wants to change medicine. We are empowering the masses to communicate to each other, and come to conclusions that would not otherwise be reached in the traditional healthcare system. Technology has enabled us to create a platform to facilitate discussion and data-sharing that provides value where the market/patients do not realize they wanted it. It’s almost like we are Apple in some ways, where we are providing a service that the market didn’t know it needed, and only after we show the market what we have to offer, does it realize that it is desired.

We hear you speak French – c’est génial! What else do you do for fun outside of the office?

I am mostly coding in the evenings, but I also salsa dance, and do spin in the winter, and run in the summer. I did competitive ballroom dancing in college, which opened up my world to partner dancing. I started learning salsa in senior year of college, and continued after graduation. Next up is learning some more swing/lindy hop and west coast swing (though as you might have guessed, California is better for west coast swing than in New England).

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“I am slowly building my self-esteem “ – PatientsLikeMe member SuperChick shares about her journey with PTSD

Posted March 4th, 2015 by

PatientsLikeMe member SuperChick is a veteran living with post traumatic stress disorder (PTSD), and her story is one of learning to cope with emotions and frustrations. She’s living proof that things can get better – she’s a loving mother of two, has a great husband and is managing several other mental health conditions. Below, she shared about the sexual abuse she experienced while serving in the military and explained how her previous husband physically assaulted her. Superchick also describes the symptoms of her PTSD and how the community on PatientsLikeMe has been “a huge help” to her. Read about her journey below.

Note: SuperChick shares about her story of abuse, which may be triggering.

Can you speak a little about your PTSD and what led to your diagnosis in 1986?

I was originally diagnosed with PTSD after being raped while I was in the military. I believe I was more susceptible because I had been molested as a child and didn’t have good family support or dynamics. I worked through it, but was diagnosed again in 2007 after leaving a severely abusive marriage, where I was raped multiple times and choked at least twice. I was emotionally abused and didn’t even realize it was abuse. I stayed for fourteen years trying to change myself because my ex-husband had convinced me I was the problem and couldn’t do anything right. It destroyed my self-esteem and any healthy coping skills I had.

What are some of the symptoms you experience because of your PTSD?

Since being diagnosed with PTSD the second time, I have numbed my emotions, I experience anxiety, and I have trouble falling and staying asleep even though I may be thoroughly exhausted and am taking medications for sleep. Sometimes I am afraid to go to sleep. I sometimes have nightmares, although not nearly as often as I used to. I have difficulty fully trusting my current husband, or people in general for that matter, even though I know he would never harm me and treats me with tremendous respect. I have suffered from a very low self-esteem and for a long time felt responsible for the trauma. I react more intensely to triggering situations than other people would. I am slowly building my self-esteem, but that is still a struggle for me.

You’ve got two wonderful children – how does PTSD affect your family life?

Because my children spend half their time with their father, I worry about them when they’re with him because I know how abusive he can be. I worry about them being sexually abused or harmed and am very protective of them around anyone I don’t know very well. I’m afraid of my daughter becoming involved in abusive relationships when she grows older and my son becoming an abuser. In a positive sense, I am very affectionate and make time to listen to them and engage in activities I know they enjoy because I want them to experience healthy love. I am remarried to a man who truly loves and respects me. My husband and I try to model a healthy relationship for them.

It’s hard for my husband and me, though. The fact that I still have to be involved with my ex-husband and am told over and over again by the court system, child protective services, and all the mediators we’ve worked with that I have to get along with him makes things very difficult. It minimizes or completely dismisses the trauma I’ve experienced. My husband wants to protect me, and this makes him feel frustrated and powerless. There is no way to get along with a narcissist and abuser. I want to move on and not have him as the focus of our lives, but then something happens and it starts all over again. Sometimes my husband feels shut down when he suggests something I have already tried and found to be futile.

I’ve come to realize that while I have been dealing with all of this for over seven years, he came into this halfway through and is in a different place than I am, having to deal with emotions and frustrations I’ve already experienced and dealt with. He is beginning to understand that his approach can sometimes trigger my symptoms, so when he feels like I’m shutting him down I am actually trying not to go back to that pain. It’s hard in that respect for me to be there for him. We plan to go back to family therapy to help develop a healthier focus for our lives. We’ve been dealing with adversity that has out of necessity been the major focus of our lives, but now we need to move on.

How have you learned to live and cope with your PTSD?

I’ve been in therapy since before I left my marriage, and finally found a therapist who has helped me overcome many of the symptoms of PTSD through EMDR (eye movement desensitization and reprocessing), which helps change the way I react to the memories. For the most part, I am able to remember the trauma without it bothering me. I still experience triggers, but am able to process the emotions using cognitive behavioral therapy skills and journaling. When I am triggered, I make sure I take care of myself through prayer, talking with my husband and therapist, and doing things that help me relax, ground me, and fully engage my mind, like playing my flute and piano.

The community on PatientsLikeMe has been a huge help. I’ve been able to get support from people all over who have been through what I was going through, and that has helped me cope and make better decisions about my health. I was able to see what my main issues were through the mood map and monitor the effectiveness of my medications. There were many times the PatientsLikeMe community were far more helpful than my doctor.

You’re also living with bipolar II, depression and a few others conditions – how do these affect each other?

I believe the PTSD triggered the bipolar, because I never had symptoms until after I left my marriage and had symptoms of severe PTSD. As I look at symptoms of PTSD, it explains a lot of behaviors I didn’t fully understand, like self-harm, which began as I started to talk about and process the trauma of long-term sexual abuse in my previous marriage. As I’ve worked through many of the issues causing the PTSD, I’ve found that I no longer experience the symptoms of bipolar and have been able to decrease my medications. If I do experience depression now, it is short-lived and related to a specific experience.

As a veteran, what is one special message you’d send to your fellow veterans also living with PTSD?

I think veterans have experiences that only people who have been in the military can understand. Military units are like family, and I find I miss that sense of community now that I’m retired. Meeting with other veterans, especially those with shared experiences of PTSD, may be helpful because those people are more likely to relate well.

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