13 posts from March, 2014

PatientsLikeMe invites patients to lead research projects on Open Research Exchange

Posted March 29th, 2014 by

New $2.4 Million Grant from the Robert Wood Johnson Foundation Supports Two Patient-Led Projects in 2014 to Develop, Test and Validate Patient-Reported Outcomes

CAMBRIDGE, Mass.—March 27, 2014—Expanding on its mission to put patients at the center of clinical research, PatientsLikeMe today announced that patients can now apply to lead the development of new health outcome measurements using the company’s Open Research Exchange™ (ORE) platform. This call for participation is a way for people living with disease to become the researcher, and to use their own and others’ experiences to create new health measures that are more meaningful, helpful, and relevant.

ORE was launched in 2013 as an online hub for the development of patient-reported outcomes (PROs)—measures used by clinicians to gauge health, disease severity, and quality of life. Since then, thousands of PatientsLikeMe members have given researchers feedback on measures relating to hypertension, treatment burden, diabetes and appetite, and primary palliative care. There were six pilot studies fielded on ORE last year and, while response goals varied from study to study, on average researchers using ORE collected 100 percent of their required responses in less than a week’s time. PatientsLikeMe’s Vice President of Innovation Paul Wicks said that’s far faster than the average 6-12 months it can take to gather similar data via in-person meetings or telephone and web-based questionnaires.

“We’re only beginning to see how ORE can simplify and speed up the research process, and how our members’ experience with more than 2,000 conditions can help researchers more clearly hear the patient voice,” Wicks said. “Now, we’ll be able to work alongside patients as they shape the next generation of research tools and lead future advancements in the research process.”

The Robert Wood Johnson Foundation (RWJF), whose 2013 grant of $1.9 million funded the platform’s start, will accelerate ORE’s innovative approach to developing measures with an additional $2.4 million grant.

“We are eager to invest in innovation that explores how to put patients more firmly in the driver’s seat of their care and of discovery in medicine,” said RWJF Senior Program Officer Paul Tarini. “We’re excited to see the potential impact that patients can have in clinical care and research with ORE’s new phase.”

Patients who want to ensure research goes in a direction that addresses their needs and concerns and who have an idea for a new measure are invited to apply at https://www.openresearchexchange.com/patients.

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 40 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook. 

About the Robert Wood Johnson Foundation

For more than 40 years the Robert Wood Johnson Foundation has worked to improve the health and health care of all Americans. We are striving to build a national culture of health that will enable all Americans to live longer, healthier lives now and for generations to come. For more information, visit www.rwjf.org. Follow the Foundation on Twitter at www.rwjf.org/twitter or on Facebook at www.rwjf.org/facebook.


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

Posted March 27th, 2014 by

 

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

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

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Are you at risk? American Diabetes Association Alert Day

Posted March 25th, 2014 by

 

According to the American Diabetes Association (ADA), over 25 million people are living with type 2 diabetes in the United States, and 7 million aren’t even aware they have the condition. What’s more, 79 million people have prediabetes, a condition that can include several symptoms of diabetes.1

Do you know if you’re at risk for type 2 diabetes? Today is American Diabetes Association Alert Day, and it’s all about learning and recognizing risk factors. Take the ADA’s online diabetes risk test to learn if you’re at high risk – it’s fast, free and easy. The ADA’s official fact sheet is also full of useful information about diabetes and today’s activities, including Step Out walks and Alert Day Center education events. Visit the ADA’s website to find an event in your area.

Living with type 2 diabetes can involve many lifestyle changes, so if you’ve been diagnosed, are living with prediabetes or are at high risk, visit the PatientsLikeMe type 2 diabetes community to check in with your fellow patients and learn how they manage their condition. You can post questions in the forum and get answers from others living with diabetes, check treatment reports to see what people are taking to manage it, and track your own symptoms to get a better understanding of your own health.


1http://main.diabetes.org/dorg/alert-day/alert-day-2014-fact-sheet.pdf

 


What do you know about brain injuries?

Posted March 23rd, 2014 by

The Brain Injury Association of America (BIAA) explains it simply – a brain injury can happen anytime, anywhere, to anyone. That’s why March is Brain Injury Awareness Month. It’s time to learn more about traumatic injuries that can affect the brain and nervous system and share our experiences to increase awareness about everything from concussions to long-term disabilities.

If the skull gets hit hard enough, the brain can experience concussions, contusions and other types of traumatic conditions. It’s a little different for anoxic or hypoxic brain injuries – these happen when the brain receives too little oxygen, or none at all.

This month, there are plenty of ways to raise awareness about all types of brain injuries.  Reach out to your state’s BIAA affiliate to see if there are any local activities to participate in. The BIAA also has a great Brain Injury Awareness Month logo. Share it on Twitter and Facebook to spread the word on social.

If you’ve been recently diagnosed with a brain injury, you can visit the TBI community on PatientsLikeMe and share your experiences in the injuries and traumas forums. Over 900 TBI members are tracking their symptoms and sharing information about their treatments –join in today.


“Post-MS, I’m one of the strongest people I know” – PatientsLikeMe MS member Jazz1982 opens up about her experiences with MS

Posted March 20th, 2014 by

PatientsLikeMe members are located all over the world, and this month, Swedish MS advocate Jazz1982 shared about what life is like on the other side of the Atlantic. She spoke in detail about the stigma surrounding MS, her exceptionally strong mindset and her experiences with Betaseron, Tysabri, Mabthera (Rituximab) and a few other pharmacological treatments.

 

You mentioned you hail from Sweden – a lot of the MS community has been talking about the new drug Lemtrada that was recently approved over in the E.U. What have you heard about it?

Well, I’ve been living in Sweden for the past 4 years, and I’ve only heard about Lemtrada through my neurologist when he mentioned the list of viable medications I could switch to, and he did not recommend it for my case. It was shown to cause an increased amount of infections due to a compromised immune system, and I already had an almost chronic UTI while on Tysabri, so we voted it out.

MS awareness is a big part of your life – have you connected with any fellow MS advocates in Sweden or the greater E.U. through PatientsLikeMe?

MS awareness is a very big part of my life, but also as a side note, I have to say that I learnt not to say I have MS. 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, when in reality I was very fragile and easy to break before the MS. Post-MS, I’m one of the strongest people I know, and I take things very differently from how I was before. Priorities change, your body changes, you change and become flexible; this is to deal with everything MS might throw at you because it spills into your everyday life, and being flexible just becomes second nature to you. Things become far simpler than they were before because you have bigger problems than your annoying boss, your untamed hair or not having a boy/girlfriend. When you have MS or any other chronic disease, your national anthem bellows the sound of constant loss, and it hurts to hear your name in the song. You have a choice to let the so-called bull grind you to a pulp or see what you have and use it to make the best out of the situation. I always get the ohhhh you poor thing look once anyone finds out that I have MS, and quite frankly, I’m not interested in their pity. What I am interested in is leaving the world a better place than when I came in, and either you support me or work with me, otherwise, I don’t have the patience to deal with pre-conceived negative notions that people have around any sort of illness.

On the more positive note, I love it when people ask questions about being sick. The other day I had a family member ask “how is it that someone who can only walk with a walker be happy?” When you have lost everything (your marriage, your career, your friends, the life you once knew) and you learn how to walk again, it’s the most ecstatic feeling in the world to be able to take a step, completely unaided by another person. Everyone wants to be independent, and when it comes back, no matter what shape or form the package comes in, you love it and you love it intensely. Questions are more than welcome, and it makes me feel good to be able to shed some light on the situation.

It’s a personal choice, and I tried to share it but found it to be an overall negative experience where no one was learning from it, so I chose to mostly keep it to myself.

So, yes I have spoken to others that have MS, Parkinson’s, stroke, etc, in Sweden, though PLM is not as popular here than in the US.

Many members have shared that they had trouble finding a diagnosis. Was that your experience, too?

I have exhibited symptoms since I was 8 years old, which is highly unusual, but my MS went into full swing in my 20’s and I wasn’t diagnosed for 2 years while my condition rapidly deteriorated. A diagnosis was both a relief and a shock to my system. Everything comes in a 50-50 coin flip, one way it’s a disaster and another it’s a burden off your shoulders. It’s not something you could have evaded if you just ate and exercised right, you get to hold up the MS card and say “see, I knew I wasn’t insane! I knew I wasn’t imagining it, it actually has a name.” The human brain is the ultimate categorizing machine, you need to categorize it for yourself and so others know how to deal with you. Once the category has been chosen, then the mission begins of going through the stages of mourning the loss of the old you and embracing the new you. I found that to be the easiest part, the hardest is seeing who gets on board with you and who doesn’t. It’s kind of like fast forwarding through a tape of your life while everyone else is still in “normal” mode, it’s painful but you learn a lot. It’s an experience that no one welcomes at first, but you learn to see it as a long-term benefit! Similar to the saying the truth shall set you free, but it will piss you off first.

Can you share a little about your treatment experiences with MS? Have you ever changed treatments? And if so, why did you decide to?

I first started out with Betaferon (Betaseron to US readers), which was a painful 3 years, but I didn’t have much choice when it came to medication back then. As it turns out, I was allergic to interferons, and as you may know, medications are determined by a trial and error method, which can be catastrophic. My slow decline into what I see as losing my humanity began and didn’t stop until I met my current neurologist (whom I love to pieces), when he immediately took me off the Betaferon and switched me onto Tysabri. I was one of the lucky ones, it was nothing short of a miracle. I suddenly went from not being able to see, feel or think to leaps and bounds better (along with rehabilitation) when I earned my Master’s degree, and I was able to walk again and simply gained control of my body and my life in the process. It was tough, but to see your brain functions come online one by one is an honor in itself really, and well worth it. After 2 years on Tysabri, we did a blood test, and my JCV antibodies were too high for comfort, so I had to switch.

My neurologist follows protocol but he also listens to my reasoning, and we had a long discussion about my treatment choices. Protocol states that I try Gilenya after Tysabri, but after doing some research I found Mabthera or Rituximab. Now, Mabthera is also a chimeric monoclonal antibody that depletes B cells, while Tysabri depletes T cells and a significant link was found between the depletion of B cells in regard to T cells. In other words, you deplete B cells then you deplete T cells in the process while not compromising your immune system. Now Mabthera is used in Rheumatoid Arthitis and Non-Hodgkins Lymphoma, but it’s off label use was for MS. Gilenya uses a different method all together and to my mind, why try something when you don’t know its efficacy on your body, while you already know what Tysabri has done. So, after a long talk and seeing the numbers for all the medicines’ efficacy, we chose Mabthera. My neurologist was supportive of the decision, made and prescribed the treatment and explained it fully. He even gave me a hug at the end of it. 🙂

I can definitely say Mabthera was even better to me than the Tysabri ever was. I am currently on Mabthera and it may sound scary (most of the MSer reports I read were that of impending doom) but I asked my nurse and neurologist about it and they said that MSers barely noticed anything at all. I am currently on Mabthera  (just started it 3 months ago) and would say if Tysabri worked well for you, I highly recommend it if your doctor gives you the green light. It may sound daunting to try an off label drug but I didn’t have a single symptom on it.

As I’m sure you all know, switching medications was not easy and I had prepared for the worst but went in hoping for the best. Usually, if anything is to go wrong, it will during the first hour of the infusion. I went in prepared with my anti-histamine (some people experienced allergic reactions) and my Tylenol but the hospital staff gave me that plus a small dosage of cortisone (5mg) but never did I even dream that I wouldn’t experience even 1 symptom. I get an infusion every 6 months, and during the infusion the nurse checks your blood pressure every 30 minutes and increases the drop rate. The infusion lasts 5-6 hours (I am sometimes longer since my veins see a needle and hide like they saw the abominable snowman, and it takes an average of 3 times to get a vein, my record is currently at 6). Clinical trials and previous MSers have used it safely for up to 8 years, which to me is pretty impressive.

You share a lot about MS research in the PatientsLikeMe forum – how do you see sharing info like this, and your own health experiences, helping others like you?

Numbers are the sexiest thing. I know, people don’t associate numbers and sexy but hear me out. They help me determine which direction to shift to, help others, and they’re the universal bind that holds us all together. I get to make an important choice without the influence of others, unreasonable emotions or illogical judgments. Numbers don’t lie; knowledge is king and with this evidence I can increase my quality of life and succeed at being me, which in the end, is all that matters. If that isn’t sexy then I don’t know what is.


Diabetes, behavioral changes and a surprise donation: An interview with Melinda Maryniuk, MEd, RD, CDE, FADA

Posted March 17th, 2014 by


Diabetes Alert Day is just around the corner, and to get a jump start on raising awareness for this chronic condition, we recently caught up with Melinda Maryniuk. She’s the Director of Clinical Education Programs for the Joslin Health Solutions division within Joslin Diabetes Center. Her areas of special interest include nutrition, patient education, behavior change, and increasing access to quality diabetes education services. (Check out her full bio at the end of this post.) Melinda spoke with us about how she got her start in diabetes education, what she wished more patients knew and her philosophy behind behavioral changes.

Can you tell us a little about how you became interested in dietetic education?

Growing up, I had always seen myself as a schoolteacher. But when it came to choosing a major in college, my dad pushed me to be some kind of scientist (I don’t remember why) even though I was not particularly interested (or good at) the subject! After changing majors multiple times (medical technology…biology…) and feeling completely without direction – my mom asked me a really important question. What do you like to do most? When I answered “eat” – she suggested I consider being a dietitian. Taking a nutrition class in college for the fun of it got me hooked. It was a perfect blend of science (which turns out I really did enjoy when it came to food chemistry) and teaching.

During my dietetic internship, where about a year is spent in a medical center before taking the exam to become a “registered dietitian” (RD), I quickly learned I was not comfortable working with sick patients in inpatient settings. I wanted to keep people OUT of the hospital. Once I started working in the field of diabetes education 35 years ago, I knew this was the right path for me. I never thought of people with diabetes as “sick” – but just having to be a little more intentional about making healthy food choices.

Looks like you’re also a believer in behavioral change. Can share what that means for the patients you work with?

We are all responsible for our day-to-day health care. We make hundreds of decisions each day that may affect our health. We choose to smoke or not smoke. Brush and floss our teeth. Choose healthy foods. Wear seat belts. Keep our weight in check. Be physically active. Have annual check-ups with our doctor. Take or not take the medicines (or vitamins or whatever) are prescribed to us. Much of what we do becomes automatic and we don’t even think about it. If you are generally “healthy” – you can make what might be considered poor choices without any immediate consequences.

When diagnosed with a chronic condition like diabetes, there are some behaviors that must be done (like taking insulin) in order to survive. There are some behaviors that should be done (like checking blood glucose) in order to reduce risks of serious problems. And there are some behaviors (like choosing healthy foods and being more active) that can lead to living a longer and healthier life. Thus, while adopting healthy behaviors is important for everyone, it is truly a matter of survival or at least greatly improved quality and length of life for people living with a health condition like diabetes.

When I first started out as a diabetes dietitian – I thought I had all the answers. I believed that if I could just tell people what to eat…they would stop eating the foods they loved that were not good for them and eat what I told them. I made up dozens and dozens of sample menus, lists of “dos and dont’s,” fancy handouts persuading people how to build-a-better-breakfast. I was recognized as a very creative and entertaining “teacher.” But while my “students” (patients) may have been “learning” something – they were not necessarily doing it.

So I changed my approach. I found that I became more effective when I followed the “ask-don’t-tell” philosophy of behavior change. Not telling the patient what to do…but asking them what they would like to do, how they think they can do it, how I could be of help and working with them to create reasonable action steps to actually do it. I believe for people to be successful in making changes in their behavior, they have to settle into an understanding of why that change is personally important for them to make. And then break it down into small steps. Having a healthcare provider, diabetes educator, coach or just a supportive family member or friend (even within an online community) can help see that intention to change – become a lasting behavior change.

I’ve long been a big fan of this quote (directed to doctors) from physician and philosopher, Albert Schweitzer, which also reflects this thinking: “Each patient carries his own doctor inside him. They come to us knowing this truth. We are at our best when we give the doctor who resides within each patient a chance to go to work.”

How do you see online communities like PatientsLikeMe contributing to patient education?

Online communities are a tremendous resource for people living with a wide variety of different health conditions. Research has shown you’re more likely to stick with the healthy behavior changes you make if you receive some kind of ongoing support. An online community is a perfect way to both offer and receive that kind of support. I love to see how these communities are growing to share ideas, tips, suggestions, practical advice and real-world experience. I think peer-to-peer support can be as valuable as reaching out to your healthcare team. That said, and while I’m very open to new therapies and sharing information, it’s still essential to have your primary care provider be part of your decision team for products and new paths you want to try.

There’s probably a lot you wish more people that are living with diabetes knew, but what would be your top three?

#1. Know Your Numbers. By that I mean, know the results of important lab tests and exams done for diabetes. Firstly, know what your A1C is, what it should be.. and if it is not where it needs to be, know what to do to get it there. Know what your blood pressure is…and what it should be. Other important lab test numbers to be aware of are your LDL cholesterol and a protein test to check kidney function. Have an annual dilated eye exam and make sure your feet are checked by your doctor to pick up any potential problems early. Being proactive in knowing your test results and making sure you and your healthcare team is taking action towards reaching target results helps you to live a long and healthy life with diabetes.

#2. If you’re not getting answers you understand, change up your healthcare team. If you feel frustrated with your physician, an important first step is to tell him or her what you’re looking for and how they could be more helpful. Sometimes people leave their doctor when what could have helped is just having the conversation of how to improve the relationship! Ideally, it is great to have more members on your healthcare team – like a diabetes nurse educator or dietitian – but that may not always be possible. However, you may be able to form a connection with a community pharmacist who is interested in diabetes that can also serve as a support and answer questions. Also, because diabetes CAN be hard…there may be times when it will be helpful talking with a professional psychologist or mental health counselor to help you navigate the stresses and challenges of living with a chronic disease. And surround yourself with people who are positive and supportive. Sometimes those closest to us don’t provide the support we need (or are misguided in how they are trying to “help”). Make sure you point out HOW they can be more helpful. And…this is a great place for online community support systems like PatientsLikeMe!

#3. Your diabetes treatment plan will change over time. Whether you have type 1 or type 2 diabetes, be prepared that the doses and types of medicine you take will change. That does not mean your doctor can’t figure out what is going on…or that your diabetes is getting “worse” – but your body can change and how it responds to different medicines can change. People with type 2 diabetes are often not prepared in their understanding that over time they will likely need to take insulin by injection. No matter what the medication regimen you follow, a healthy meal plan and regular program of physical activity is critical to helping the medicines work best. You need all three- diet, activity, medicines.

What do you wish patients knew that we haven’t asked you about?

Learning about diabetes is a lifelong process. You may have had it for quite some time and attended a class years ago. Know that there are always new things being learned. New discoveries. New medicines. New approaches to meal planning. Never stop learning and asking questions. Subscribe to a magazine like Diabetes Forecast (from the American Diabetes Association) or take annual diabetes refresher classes at your local diabetes education program. As Dr. Elliott P. Joslin, the founder of the Joslin Diabetes Center, said way back in 1934, “the diabetic who knows the most, lives the longest.”

And we just can’t pass up the opportunity to ask you about this one – Last October a donation was made by CheeseBoy in your name to the Greater Boston Food Bank. Can you share what that was all about? 

Ha! How did you hear about that?!? My sister picked up a flyer for a contest that Cheeseboy, a fast food chain was running in honor of their millionth grilled cheese sandwich being sold. She challenged everyone in our family to enter the contest – which was to write a (very) short essay stating to what group Cheeseboy should make a $10,000 donation – and why. I’d been thinking a lot about food insecurities and how (surprisingly) not having access to enough food in the poorer populations of our nation (and the world) is being increasingly linked with a higher risk of obesity and diabetes. It stands to reason. When a person has very little income the food that tends to be purchased tends to be low quality and high calorie (buying a super size soda can be cheaper than buying a bottle of water!) So, I wrote a 250 word essay to recommend a donation go to Feeding America – the nation’s leading domestic hunger relief charity. I didn’t realize at the time Cheeseboy is a Boston-based company so they asked if I minded for the donation to make an even bigger impact by giving it all to the Greater Boston Foodbank – that is part of the Feeding America network of charities. What a thrill it was to feel responsible for a donation of $10,000 to such an important organization that ultimately provides increased comfort and security for people who are at high risk for many health problems – including diabetes. And, as a bonus, I received a special card allowing me grilled cheese sandwiches for life! The ultimate in comfort foods!

About the PatientsLikeMe diabetes community

There are more than 14,000 PatientsLikeMe members currently living with diabetes, and many of them have been sharing their experiences and contributing to real-world research that could benefit their fellow diabetes patients. If you’re living with type 1 or type 2 diabetes, you can find others just like you on PatientsLikeMe. Track your own experience with a personal health profile, or share your story in the community forums to start living better together.

Join in today

More about Melinda Maryniuk, MEd, RD, CDE, FADA

As Director of Clinical Education Programs for the Joslin Health Solutions division within Joslin Diabetes Center Ms. Maryniuk oversees the clinical, educational and quality improvement activities for the 40 Joslin Affiliates and outreach programs. She also coordinates the education activities for the HealthCare Services Department, including several national diabetes education initiatives. Her areas of special interest include nutrition, patient education, behavior change, and increasing access to quality diabetes education services.

Ms Maryniuk has worked in the field of diabetes education for over 30 years and has lectured and published extensively for both patient and professional audiences around the country and internationally. She is active within the American Diabetes Association, having served on the Board of Directors, as chair of the Education Recognition Program Committee and is currently an Associate Editor for Clinical Diabetes. Within the American Dietetic Association, Ms. Maryniuk served as Chair of the Diabetes Care and Education Practice Group as well as Chair of the Division of Clinical Dietetics and Research of the Council on Practice. She is the recipient of the 2005 Outstanding Educator in Diabetes from the American Diabetes Association as well as the 2010 Medallion Award from the American Dietetic Association. She recently served as a Co-Chair for the task force to review and revise the National Standards for Diabetes Self-Management Education.

Melinda has a BS from the University of Tennessee-Knoxville and a MEd from Tufts University. She completed a dietetic internship at the Frances Stern Nutrition Center in Boston.


“Myeloma has not affected my day-to-day life” – PatientsLikeMe member AbeSapien shares his experience during Multiple Myeloma Awareness Month

Posted March 16th, 2014 by


March is Multiple Myeloma Awareness Month, and to keep the awareness going strong, we’re sharing our recent interview with PatientsLikeMe myeloma community member Bob, also known as AbeSapien. The happily-married, long-time data processing expert spoke about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding.

 

 

Your PatientsLikeMe username, AbeSapien, is a reference to a comic book character – can you tell us a little about the meaning behind it? 

The movie Hellboy had been out fairly recently. It’s one of about three that we throw in to watch regularly (the others being Van Helsing and League of Extraordinary Gentlemen). The character Abe Sapien fits my personality as a straight man, although I’m not above throwing in a dose of sarcasm when the situation calls for it.

Multiple myeloma can be challenging to diagnosis – what was your diagnostic experience like? When did you first start experiencing symptoms?

I actually did not exhibit any symptoms until just before I started treatment. I was diagnosed with MGUS (Multiple Gammopathy of Undetermined Significance) in 2001 when a blood test taken during an annual physical showed above normal levels of the IgG protein. At that point my condition was only monitored via periodic blood tests.

I changed doctors in 2010 and my diagnosis was upgraded to Multiple Myeloma at that time. We continued to monitor my condition through periodic blood tests but performed no other treatment until December of 2012. At that time I suffered an incidence of blindness in my right eye. It was determined that the blindness (which passed off) was cause by a blockage of the central vein in the eye as a consequence of the thickening of my blood due to the high IGg levels. I started treatment at that time. That was the only real symptom I experienced as a consequence of the disease.

What’s it like living with multiple myeloma day-to-day?

Other than that first symptom of temporary blindness, Multiple Myeloma has not affected my day-to-day life. Treatment, on the other hand, required a full 12 weeks of disability, I still don’t have my full strength or stamina back from the treatment (Autologous Stem Cell Transplant). It’s a great diet aid – I lost 30 pounds in the month I was in the hospital.

The most major effect the disease for us has had is economic.  I can no longer obtain life insurance or long term care insurance at any price, and have not been able to since my original MGUS diagnosis.  It is fortunate that I have great health insurance through the company I work for.  And, absent that, at least under the Affordable Care Act I can no longer be denied health insurance due to preexisting conditions.

On your PatientsLikeMe profile, you mention horseback riding as one of your passions – can you share more about that with the community?

My wife and I got into horseback riding in our mid-thirties.  We both owned our own horses and showed in Hunter / Jumper (English) shows in our area.  Later we purchased a training stable where we taught riding to between 200 and 250 students a week, most through five of the local park districts.  That was one of the best times we had because the kids were great.  I also taught the adult riding classes, which were always a hoot.

When I was diagnosed, we decided we had to put the stable up for sale.  I had no clear idea how my condition would progress and we didn’t want end up having to deal with my treatment on top of all the work running the stable.  As it was, I didn’t start treatment until another seven years after we sold the stable, but we had no way to know that, or to know how long it would take to sell the stable.


Stand up and be counted during National Multiple Sclerosis Education and Awareness Month

Posted March 14th, 2014 by

 

Here at PatientsLikeMe, every experience counts, whether you’ve just been diagnosed, are trying a new treatment, or managing your symptoms. This month, we’re standing up and focusing on Multiple Sclerosis (MS), a neurological condition that affects 2,500,000 people around the globe—including more than 400,000 in the United States.1

To help raise awareness about MS, the Multiple Sclerosis Foundation (MSF) and its partners have named March “National MS Education and Awareness Month.” Together, we can stand up and help those living with MS be counted.

There are many different awareness activities you can participate in over the next few weeks. You can also submit a photo to the MSF as part of their “MS Awareness: Make It Count” contest. You’ll need three things:

If you’ve been recently diagnosed with MS, check out our MS patient interviews and blog posts. And you could also join more than 33,000 people with MS at PatientsLikeMe – it’s one of the largest communities on the site, and there are always some great discussions going on in the MS forum.


1 http://www.msfocus.org/Facts-About-MS.aspx


“Life is good” – PatientsLikeMe community member John_R speaks about his new life after being diagnosed with pulmonary fibrosis

Posted March 11th, 2014 by

Several people in the PatientsLikeMe community use the phrase “new normal” after being diagnosed with pulmonary fibrosis (PF), and PF member John_R doesn’t’ think his new normal is all bad. This month, he chatted with us about getting diagnosed with PF, bringing oxygen to the workplace, and how living with his Sweetie keeps him focused on the positive moments of his journey.

You were recently diagnosed with PF in 2013 – can you tell us a little about your diagnosis experience?

I was initially diagnosed with PF back in 2002 via a CAT scan with contrast. Around 2000, some haziness was seen on an x-ray, and my doctor recommended that I see a pulmonologist. I was getting ready to move to Texas, so I waited until I settled down and found a new GP. It was after my first physical with my new doctor that I was sent to see a pulmonologist. He sent me for a series of CAT scans from April of ‘02 to Jan ’03.

The first scan indicated “There are several patchy areas of infiltrate identified peripherally in both lungs. These are identified at the anterior and lateral upper lobes as well as in both lower lobes. Mild patchy infiltrate in the lingual and right middle lobe are also seen.” The third scan concluded “….these findings suggest mild fibrosis.” and “…mild stable interstitial airspace disease consistent with fibrosis given stability.”

The doctor indicated that my PF was “mild” and “stable” so not much to really worry about. Each time I visited, pulmonary function testing showed that my Forced Vital Capacity (FVC) dropped a few percentage points. My doctor did not seem to worry, so neither did I. In May of 2011 my father died from Idiopathic Pulmonary Fibrosis (IPF). That was when my pulmo started to show concern about my PF. In 2013 my FVC dropped to less than 50%. Off to another CAT scan with contrast. Insurance denied that procedure and required an HRCT (hooray for my insurance company!). The scans showed lots of damage, but were not conclusive for IPF. In August I had a VATS Biopsy performed that proved IPF.

Following the biopsy I was referred to my ILD Specialist at UT Southwestern.

You talked a little in the forum about your first day at work with oxygen – can you share a little about that for our blog followers? 

The first day I used oxygen was on Christmas Day. Since I had been out from work for the Biopsy in August, everyone knew I had lung issues. The week before Christmas I let my boss, the ladies in the front office and my guys know that I would be coming back from Christmas using oxygen so there would be no surprises.

I use the small M6 oxygen tanks in a bag that slings over my shoulder for my portable O2 use. That first day of using oxygen at work was the first day in a long time that I could climb the stairs up to the office without having to sit at my desk for a few minutes, gasping for breath and regaining my mental clarity. It was also the first time in a long time that I made it home with some energy left.

My oxygen use was quickly accepted at work. There were a couple of double takes when people who did not know I was going on O2 saw me for the first time. A quick smile from me was returned and all was back to normal.

How is life different with PF than before? What have been some of the hardest losses, and what have you gained?

“The New Normal” How do I explain how life has changed without sounding much more negative than I really am?

Life is different not just for me, but also for my Sweetie. Our new normal does not include some things that were important to us. We had to find a new home for our parrot, Tinker. Lighting a fire in the fireplace on a cold winter’s evening is part of our past. No more soaking in hot tubs or spending time at the shooting range.

We find other ways to be romantic, so the hot tubs and cozy fires are not that big an issue. I do miss Tinker and miss my time on the range.

Making sure I have plenty of oxygen has become a part of pretty much every decision we make. I am still the cook in our house. When I was first routing the tubing around made sure I could reach the stovetop with a bit of slack to spare. I also do the grocery shopping and, as we talked about before, still work.

Every chapter of my life that I get to spend with my Sweetie is the best chapter to date. Life is good. For the first time ever I have a year’s worth of vacation planned in advance. Vacation is going to be spent with family and I am really looking forward to those get-togethers.

Looks like you use your PatientsLikeMe PF Severity Score, track your treatments and chart a lot on your profile. What do you find most useful about these tools?

MyCharts is an awesome tool and more people should use it. The charts give a nice visual snapshot of how you are doing. The information is great to print out and bring with you to doctor’s appointments and I wish I had found PatientsLikeMe much sooner. I was just filling out paperwork for a genetics study and had to use several sources to collect information on medication history. It would have all been there if I had started charting sooner.

I also like to look at other peoples’ charts. I compare where I am to where they are and what they are going through. This helps me come to grips with my future.

What advice would you give to others who might be newly diagnosed with PF?

Number one, find an Interstitial Lung Disease specialist. Community pulmonologists are just not that knowledgeable about PF. The vast majority of their patients have COPD, Emphysema, Asthma and the like.  They just have little or no experience with PF.

Next I would advise to not read too much of the medical literature found on the Internet until after you have spoken with a specialist. There is a whole lot of scary stuff out there that probably does not pertain to you. I know you are going to read it anyway, so after you do, take a deep breath and remember that you are not average and that your circumstance is different from every other person with PF. My fibrosis was discovered a dozen years ago.

Finally, hang out in the forums. Ask questions, post ideas and help us support one another.


PatientsLikeMe launches “Data for Good” campaign to encourage health data sharing to advance medicine

Posted March 10th, 2014 by

Public Service Announcement-Style Video Calls Patients to
“Donate Your Data for You. For Others. For Good”

CAMBRIDGE, MA – March 10, 2014 – Today, PatientsLikeMe kicks off a new campaign promoting the value of sharing health information to advance research. In a series of public service announcement-style videos, the company highlights a movement called “data for good,” which underscores the power of donating health data to improve one’s own condition, help others and change medicine.

“This year marks the 10-year anniversary of when our co-founders first introduced the idea that openness in healthcare is a good thing, and should be encouraged and celebrated,” says Michael Evers, Executive Vice President of Marketing and Patient Advocacy at PatientsLikeMe. “The ‘data for good’ campaign is our way of tipping our hats to the massive amounts of data that our members have shared to date. It’s also meant to inspire more people to contribute their experiences to accelerate research.

In the video series, PatientsLikeMe co-founder Jamie Heywood walks people through the journey of being diagnosed with a life-changing condition and frames the underlying problem in creating a patient-centric healthcare system. He then asks everyone to participate in a movement around health data donation – “join us in this amazing journey to make your data, your experience drive medicine”.

This campaign launches on the heels of a recent paper published by the Institute of Medicine (IOM) highlighting a PatientsLikeMe survey focused on people’s willingness to share health information to change medicine.  According to survey results published in the paper, 94% of U.S. adult social media users with a medical condition agree with sharing their health data to help patients like them and should be used to improve the care of future patients.

“Sharing helps me track important health information and improve research about this disease. If I am willing to be transparent, hopefully others will be inspired to do the same,” says Starla Espinoza, a member of PatientsLikeMe since 2008, joining just months after her multiple sclerosis diagnosis. Starla represents one of more than 250,000 members who are donating their disease data to research on PatientsLikeMe. To date, the community has contributed more than 21 million structured data points about their disease experiences including treatment and symptom reports, demographic information, health outcome surveys, lab data and more. In a recent study focused on sleep issues, PatientsLikeMe was able to pull more than 5-years worth of data to analyze from its platform – including over 184,000 symptom reports previously shared by 65,000 chronically ill patients. The company then ran an additional survey to collect more data and received 5,000+ responses in less than two weeks.

PatientsLikeMe’s “data for good” campaign will blanket all of its social media channels and invite people to join the movement (#dataforgood).  “Your data has a heartbeat that gives new life to medical research and a better future to someone like you,” says Heywood.

Anyone can join PatientsLikeMe and share their experiences to help others while helping themselves. To learn more, go to www.patientslikeme.com/dataforgood.

 

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 40 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.


Tell one person about multiple myeloma in March

Posted March 6th, 2014 by

There’s a lot of healthcare awareness going on in March, everything from multiple sclerosis and brain disease to diabetes. March is also known as Multiple Myeloma Awareness Month, and from now until April, the International Myeloma Foundation (IMF) is getting the word out with their “Tell One Person” campaign. And that’s really all you have to do, just tell one person about the facts of multiple myeloma.

So what are the facts?

  • Multiple myeloma, often referred to as myeloma, is the second most common blood cancer worldwide.
  • There are over 100,000 people currently living in the U.S. with multiple myeloma, and around 20,000 new patients will be diagnosed every year1
  • “Multiple” is used because it is a cancer of the plasma cells and can occur at multiple sites in the body
  • Although several treatment options are available, there is unfortunately no cure

This month, there are plenty of ways to focus on multiple myeloma, especially how it affects patients on a day-to-day basis. You can post the IMF’s flyer in your office or a public place, change your Facebook profile picture to this awareness ribbon and ask your town or organization to officially declare March Multiple Myeloma Awareness Month.

If you’ve been diagnosed, you can connect with the more than 400 members of PatientsLikeMe who are living with myeloma. Check out the most recent forum thread, introduce yourself to the community, and learn more about each other’s personal health experiences.


1 http://info.thebindingsite.com/march-is-myeloma-awareness-month


Getting involved during Multiple Sclerosis Awareness Week

Posted March 4th, 2014 by

Did you know that every year, the first week of March is dedicated to multiple sclerosis (MS) awareness in the United States? From March 3rd to March 9th, events will be held across the country to educate people about the four different kinds of MS and how the neurological condition impacts peoples’ lives.

In the U.S., the average person has about a 1 in 750 chance of developing MS. Worldwide, MS affects over 2.3 million people,1 and there are four different types – relapsing-remitting (RRMS), secondary-progressive, primary-progressive and progressive-relapsing. Each kind of MS varies by symptom and progression, and RRMS is by far the most common – 85% of new MS patients are diagnosed with this type. Learn more about the different kinds of MS.

The PatientsLikeMe team got decked out in orange today for MS Awareness Week!

If you are wondering how you can help raise awareness and get involved, you can:

More than 33,000 MS members are sharing their experiences on PatientsLikeMe, and together, we can
advance research and improve quality of life. What are you doing for MS Awareness Week?


1 http://www.nationalmssociety.org/What-is-MS/Who-Gets-MS