14 posts from December, 2016

Meet Glenda from the PatientsLikeMe Team of Advisors

Posted December 29th, 2016 by

 

Meet Glenda (gagafor2), a member of the 2016-2017 Team of Advisors. Glenda is a wife, mother and grandmother who finds great joy in making others happy. She’s also living with idiopathic pulmonary fibrosis (IPF).

Recently, Glenda told us about coming to terms with the “unknown” in her future and coping with anxiety: “PatientsLikeMe became my lifeline to information and patients who knew what I wanted and needed to know.” Check out the rest of her story and learn how Glenda hopes to represent other members of the IPF community.

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

I would have to say making others happy makes me smile. I love to give and do special things for others, it gives me great joy I get so excited when I can find that special gift or plan that special surprise for someone else. My family gives me the greatest joy of all. I have had a wild ride so far with my husband of 45 years and my children and grandchildren. We moved many times throughout the last forty years to different parts of the country, making so many incredible friends and have having such wonderful memories. Yes, I still print out some of my photos just to pass on to my children and granddaughters so they can also look at, hold, and remember all the great memories that will live on throughout time. I am a pretty sentimental person. Our little granddaughters six and nine are so much fun and they give me a reason to fight with all I have and to live my life the best I can.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

My greatest obstacle with being diagnosed with a terminal illness is the unknown. Not knowing to me like being in a dark room trying to find my way around, just stumbling around seeking help. Most of my family and friends always tell me “you look so good.” Yes, I do look good, makeup, hair color, and clothes can paint a pretty picture. Inside is the emotional and physical picture they do not see, nor the frightening experience of the what ifs that can happen at any time. Now I try to look at the whole picture of a person and have great empathy with what is going on with them.

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

Living with idiopathic pulmonary fibrosis is a day by day experience. Sometimes when it is hard to breathe or get a good breath it is frightening and I need to calm myself and do my pursed lips breathing to get my center and not let the anxiety run away with me. I also have generalized anxiety. One of my biggest fears has always been not being able to breathe and yes here I am diagnosed with something that can throw me off the cliff big time

Most days are good and I go on taking it one day at a time, even knowing it is a progressive disease and could change at any time with an exacerbation. I have become germ phobic trying not to get an infection or virus to cause a decline. My husband and I own our own business so I still work, now on a reduced schedule. Fatigue is sometimes overwhelming and keeps me from getting together with friends and social events as I used to. Every three months I go for pulmonary function tests which give me great anxiety before I get to the hospital to do the test. I am so afraid each time I take them that my numbers will decline. I know I cannot do a cram study for pulmonary function tests, but I do tend to over think the whole procedure for fear of lower numbers. I do take one of two medications approved in 2014 that can slow the progression of IPF in some people. Right now, I receive help paying for the drug, ($96,000 a year) but next year I will go on Medicare so that gives me financial worry also. I have heard of patients not having insurance or being able to afford the cost of these drugs, which makes me angry and sad. Something needs to change for people who need these kinds of medications.

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

When I was diagnosed with interstitial lung disease I was not given much information or why I might have gotten it. I began to look on the internet to find out what I might have. I learned that IFP was the worst kind of interstitial lung disease with no cure and a life expectancy of 2-5 years.  Boy, did I have a huge panic attack, checking into the ER. I then had testing done to confirm what I had, and then getting a phone call at work telling me I had IPF. It was so traumatic to be told this over the phone with no explanation just to wait until my next appointment in 2 months.

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

PatientsLikeMe became my lifeline to information and patients who knew what I wanted and needed to know. This amazing site gave me information, advice, and hope. Please get all the information you can so you will know the right questions to ask your doctor. I have found through my own experiences in the health care system you need to be proactive and not reactive with your health and the information you need. Please go seek supports groups and places like PLM to speak with others who have already experienced what you are going through. Then pay it forward to someone else who is newly diagnosed. We all need each other. 

Recount a time when you’ve had to advocate for yourself with your <provider, caregiver, insurer, someone else>.

A few years ago, I became very sick not able to function at all. I gave my symptoms to my physician over and over without him getting to the exact cause. This went on for a year. My doctor became impatient and annoyed with me, making me feel like a stubborn patient because I kept coming back not getting any better. I finally asked him “would you like me to see another doctor?” I don’t believe he had ever been asked that question before. I did change physicians and we finally got to the bottom of the problem. We only have one body and we are the only ones who can advocate for the best treatment we can get. I try to learn as much as I can before I visit a physician so I know the right procedures and questions to ask. I don’t like to think we are just numbers but sadly it can be that way. I have found that going in the hospital requires someone on your behalf to monitor everything being done and given to the patient.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

PatientsLikeMe gave me the hope and compassion I needed at a time I was sinking in despair. Just being diagnosed with a terminal illness is a lot to handle on your own. I immediately connected with other IPF patients who gave me sympathy but also hope. A dear friend I met sent me a book of scriptures she said she wanted to pay for and send. What an angel she has been. Then there are the friends who know so much I just can’t pick their brain enough. It is a 24/7 online support group when you need it. It has given me information to make wise choices about medication to choose, supplements to take, and ways to cope. They have helped me beyond words; I wish I could name them all but just too many. I now hope to carry the torch forward for those who are newly diagnosed to those who are further along the road we travel.

How can we make our health care work better for us?  

Tell everyone about PatientsLikeMe, how we can connect and share with other patients, put in our test results, and know how to talk to our doctors and providers while being more informed.

What made you want to join the PatientsLikeMe Team of Advisors?

The only thing I know is that I wanted to make people aware of the PatientsLikeMe website. I did not expect to be chosen. I am not eloquent at putting my thoughts in writing, nor the most informed patient. I’m just an average person who got diagnosed with a chronic illness who wants to let others know how much I rely on communicating and sharing information. I was shocked when I received the notice I was chosen.  It was only during my trip to meet my fellow advisors that it came to me why. I want patent health care to get better, patients to be more informed. I love having all the data in one place and available to share. I love being able to enter every lab test, pulmonary test and medication so all can see and compare to each other giving us the ability to make informed decisions. I value each person on the site and their willingness to share their experience, data, and all other aspects of their health care. I am an informed patient now able to have a conversation with my physician on a higher level of understanding because of PatientsLikeMe.

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Another successful 24 Days of Giving!

Posted December 27th, 2016 by

That’s right – thanks to your awesome rallying, we reached our 24 Days of Giving goal again! Together, the PatientsLikeMe community donated a total of 428,459 health data points. We’ll be making a $25,000 donation to Make-A- Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

What did the community donate? Check out this graphic for a by-the-numbers view.

 

 

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Meet Laura from the PatientsLikeMe Team of Advisors

Posted December 22nd, 2016 by

 

Say hello to Laura (thisdiva99), another member of your 2016-2017 Team of Advisors. Laura chatted with us about what it’s like to live with bipolar disorder and why she thinks it’s essential to find and connect with others who live with the same condition: “It is of the utmost importance to connect with other Bipolar Warriors. Mental illness can be very isolating.”

Laura also shared some details about her background as a professional opera singer. She’s performed all over the world and has even won a Grammy! Get to know Laura and read her advice for others who are living with chronic conditions.

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

Hearing the laughter of my husband, my nieces, and my nephews brings me ultimate joy.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

My greatest obstacle in living with bipolar disorder is having to pretend that I am “OK” all the time. People with mental illness often find that they must hide their symptoms, and live in a quiet kind of agony of the mind, so that their friends won’t leave them, or so that they can keep their jobs. Living with bipolar disorder means constantly proving to the world that I am capable and worthy, that I am more than a bag of symptoms I constantly try to keep behind my back. I have been pretending to be OK for so long now that sometimes I don’t know where the pretending ends and my true self begins. I believe that education is KEY in bringing an end to stigma. Speaking openly about something lessens the fear and misinformation surrounding that thing.

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

Bipolar disorder is an illness of opposites. I can go through weeks or months of crying constantly, sleeping all the time, and then escalate to feeling nothing at all. I want to die just so that the sadness and nothingness will stop. Then I swing up into mania, where I need very little sleep, I over-schedule myself and include myself in too many projects, and get more angry and frustrated. Eventually I want to smash everything around me, including my own head. When I’m lucky, I have brief periods of stability between depression and mania.

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

You are worthy of love. You are worthy of feeling better. You did nothing wrong. You do not “deserve this.” You are not being punished. You just need to work with your family, friends, and treaters to find love and peace in yourself again.

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

It is of the utmost importance to connect with other Bipolar Warriors. Mental illness can be very isolating. Even though I have many friends and family who want to help (and often do!), sometimes you just need to speak with someone who knows what the bipolar roller coaster is like.

Recount a time when you’ve had to advocate for yourself with your provider, caregiver, insurer, or someone else.

Not too long ago, I had to advocate for myself with my mother. My parents are my greatest allies and have been through everything with me. But my parents have also instilled in me the need to “pull myself together,” because “the show must go on” (we are a family of performers). Recently, my mother became exasperated with how I was feeling, and how I was reacting to my illness. I had to stop and tell her that even though I love her more than anything, bipolar disorder is not something that can be shoved to the side. It is not an illness that can be put in a box and left until it is more convenient. It infiltrates my brain every second of every day,  and I will never stop working with it, and trying to live with it. Advocacy is really just about education, and I think that that is something that we can do every day of our lives.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

PatientsLikeMe has shown me that I am capable of far more than I truly believe. It is so incredible to me that while other members of the community deal with horrible circumstances throughout their day, they can still take the time to offer me comfort or encouragement if I need it. PatientsLikeMe reminds me that I am allowed to be vulnerable or fragile at times, but that does not define me. It is part of the greater scheme and strength of having a chronic illness.

What are three things that we would be surprised to know about you?

  1. I am a professional opera singer. I have performed all over the world, recorded film scores, sung backup for James Taylor, sung at Superbowls and Red Sox games, and I am a Grammy award winner.
  2. I started reading when I was three years old, and I never stopped! I love the written word…especially Victorian Literature.
  3. I am a total geek…I love all things Star Trek, Star Wars, Doctor Who, and on and on and on!

What made you want to join the PatientsLikeMe Team of Advisors?

I love PatientsLikeMe, and I love helping people. When I was given the opportunity to combine those two things through the Team of Advisors, I jumped at the chance! It is so humbling and fulfilling when people bring you into their lives, and every encounter teaches me great lessons. My mother likes to say to me, “You have a big mouth; use it for good!” I hope that being a member of the Team of Advisors is doing just that.

 

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Member Susan shares about life with type 2 diabetes

Posted December 20th, 2016 by

Meet Susan (sugarpolicewoman) from Montgomery, Alabama. She loves birds, flowers and kittens and was diagnosed with type 2 diabetes over 40 years ago.

Check out her story to learn more about how she manages her condition while living in an assisted living facility.

Can you tell us a little about yourself? What are your passions?

I caught diabetes from my dad, who had diabetes, type 1.  I have type 2. I grew up in a Methodist preacher’s homes. We moved around an average of every four years, although my dad was a District Superintendent for six years once.  I had to switch schools quite a bit due to moving, therefore I never did develop close friendships, only casual acquaintances. We lived in several towns and cities in the state of South Carolina. When I was 14 years old, I caught chicken pox from my younger sister. The case was bad, probably because I had the pox later in life instead of during my younger years. When I had mumps, doctors still visited and treated sick people in the home. In front of me, my doctor told my mother I could have all the Coca-Cola I wanted. Unconsciously perhaps, that might have been the start of my diabetes.

I did not really discover diabetes until I was approximately 25 years old. Mercifully, I did not get sick during my college years. I have had my tonsils taken out, and also my spleen taken out because it was eating up my white blood vessels. I donated blood to the Red Cross one time, but that stopped when it was evident I had diabetes. I have loved books ever since they were read to me as a child, so quite naturally, I chose to be a librarian after college graduation where I majored in Library Science and minored in English. At first, I worked in a school library for one year, but working around teenagers just wasn’t for me. I worked a total of 40 years and 12 days as a federal employee in government libraries.

A favorite thing to do in junior high school and high school was reading books. One favorite time when I was a college student, I was playing softball during gym when my gym teacher had to play with us because there was not enough of us for 2 teams. I played left field, and caught her fly ball! I will never forget that! Now, during my “golden years,” I never seem to get enough time to be on my computer. I live in an assisted living facility, so the television is very welcome company! The computer is my main source for communication.

You were diagnosed over 40 years ago. Are there aspects of your condition that you still find challenging?

Diabetes can be a tricky disease. Management of my blood sugar levels has been very frustrating at times. Most the time, I know by hindsight what causes my sugar level to rise, but by then, my sugar has already risen. There is no easy way to manage blood sugar levels. You have to work hard. Other times, my sugar levels will bounce up and down like a yoyo. Once or twice, my sugar dropped low enough that I wound up in the emergency room. When the sugar level gets too low, you pass out. I was trying the wrong way to regulate my blood sugar level. The most recent challenge has been my fatigue. I feel really tired to the point that I just sit and watch television instead of doing my main daily job of putting clean clothes away. The fatigue is caused by high blood sugar. I recently discovered my dry mouth is also a symptom of high blood sugar. Thank goodness, I can solve this by drinking some cold ice water! Thinking about my husband’s declining health contributes and just adds to all the challenges.

In the forums you talk about managing your sugar in an assisted living facility where you have a restricted choice of food. Do you have any advice for others who might be in a similar situation?

The assisted living facility where I live has 24 residents in my building. There are four buildings or cottages on the campus. Meals are cooked and served to us in the dining room inside my cottage.  Meals are where the main challenge of managing my blood sugar levels becomes hard. I have very little choice of what to eat. We residents must choose if some of the foods on our plates are not diabetes friendly. Sometimes I have no choice but to eat pasta, bread, white rice or white potatoes if the menu is limited to very few items. My advice to other PatientsLikeMe members would be to do what I am trying to do. I try not to eat what I can do without. For example, if I can skip it, I avoid eating white rice or white potatoes because when these two foods get inside the body, they turn into sugar. Sugar is the diabetic’s enemy. Of course, I’d be forced to eat white rice if the cook mixes the rice with something else and creates a casserole for either lunch or dinner.

Has PatientsLikeMe has helped you manage your condition? What does it mean to you to donate your data?

When I post descriptive sentences about my condition or test results, this reminds me I must do something to improve the status of my condition. PatientsLikeMe helps me treat myself! If by donating this information about myself helps someone else, that would be wonderful!

 

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Meet John from the PatientsLikeMe Team of Advisors

Posted December 15th, 2016 by

Have you met John (JohnJFB126)? He’s another member of the 2016-2017 Team of Advisors.  John is a musician, husband and father of four. He’s also living with MS.

For John, living with an “invisible” disease is challenging, and he hopes for more compassion and understanding from others in the future. Here, John shares how he finds critical support in the PatientsLikeMe community: “It reinforces that I am not alone.”

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

What gives me the greatest joy and puts a smile on my face is knowing that I helped someone.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

The greatest obstacle living with this condition is its, oftentimes, invisibility. Especially when compared with other chronic and disabling conditions. Societal shifts need to occur resulting in more a compassionate or understanding of these challenges are a more concise, comprehensive overview of the disease and how it truly is idiosyncratic.

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

I have described this condition by comparing it to a frayed electrical cord with the inability to properly transmit the energy required to execute a function. Or, think of having MS as your computer’s hard drive sending a program execution but due to corrupt transmission lines/data paths, it needs to take additional time to map an alternate route to obtain the information and/or activate the desired program/effect.

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

One piece of advice I would offer to someone newly diagnosed with a chronic condition is: If you’ve been diagnosed with a chronic disease, it’s chronic and not necessarily fatal. Learn as much about the condition and include at least one person in this learning to serve as a buddy and/or support.

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

It has been incredibly important to me to find others living with the condition and who may be able to relate to what I’m going through. Their insights, struggles and successes have proven to be invaluable; it reinforces that I am not alone.

Recount a time when you’ve had to advocate for yourself with your provider, caregiver, insurer, or someone else.

I have often had to advocate for myself with my insurance providers; needing to articulate the need for coverage of a procedure or medication as those items were critical to my ongoing care and health stability.

What made you want to join the PatientsLikeMe Team of Advisors?

I see the opportunity to join the PatientsLikeMe Team of Advisors as the chance to learn, give, and make a difference in the lives of individuals around the globe!

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

The PatientsLikeMe community has been a source of reference, strength, and encouragement for me as I cope with the diagnosis given me.

If given the opportunity to participate in efforts to change something which would transform how the current healthcare system is implemented and designed, what would it be?

I would work collaboratively with government (legislators/representatives), pharmaceutical and insurance companies and the medical community to transform methods for the delivery of care to persons with chronic disease diagnoses and other long term health illnesses. The goal being to streamline, reduce the need for repeated/duplicative procedures, create a system that “speaks the same language” across all platforms, and delivers timely services to each patient (“tailor made” care).

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The power of your data: Patient empowerment

Posted December 14th, 2016 by

We’re more than halfway through 24 Days of Giving and we’ve been sharing how patient data has the power to create better communities, better care and a better you. So, while we’re on the subject of you – let’s talk more about how patients see themselves as the captains of their own health when it comes to care. That’s right: patient empowerment.

The results of a study we did a while back with our partners at Genentech have just recently been published in a scientific journal called “The Patient – Patient-Centered Outcomes Research.” What was this study about? Simple. It was about how finding healthcare information, interacting with peers and providers and access to healthcare contribute to your sense of empowerment as a patient with a chronic condition.

More than 3,988 of you participated. What was discovered? Check out some of the top takeaways:

Empowerment comes in two kinds:

  • Positive Patient-Provider Interaction (i.e., how favorably you view the care received from your healthcare provider)
  • Knowledge and Personal Control (i.e., how well you understand, manage and control your health condition(s))

Empowerment varies:

  • The average score on “patient empowerment” (on a scale of 15 – 75) was higher among patients with primary complaint of Parkinson’s disease (average = 62) and multiple sclerosis (average = 60) than those with fibromyalgia (average = 55) and chronic fatigue syndrome (average = 55).
    • Ooof, that’s barely English. Said another way, it appears that fibromyalgia and chronic fatigue syndrome patients feel slightly less empowered than people living with Parkinson’s or MS.
  • But across all conditions, those who were older, male, more educated and insured also reported significantly greater levels of empowerment.

What’s most important to you when it comes to empowerment?

For you, it’s important to:

  • be active in treatment goal setting with providers;
  • make sure that your provider spends enough time with you answering questions;
  • make sure that you understand the treatment and diagnosis, and any materials that are given to you; and
  • learn about and understand disease warning signs/symptoms, disease progression, and available treatment options. 

Knowledge is power:

How do you learn about your condition?

  • You use health websites like WebMD and Mayo Clinic (87%), PatientsLikeMe.com (60%), books (43%), magazines (40%), and journals (36%).
  • More than half of you get health information verbally from a doctor (59%).

What do you learn about your condition?

The information you find helps you learn about…

  • Treatment options (83%)
  • Course and progression of your disease (76%)
  • Signs and symptoms (68%)
  • Cause of condition (51%)
  • Initial diagnosis (50%)
  • Health monitoring (48%)

Doctor relationships:

  • Many of you are satisfied with your access to healthcare services (64%) and your relationship with your doctor (77%).
  • The majority of you (79%) feel like you have a say in your treatment decision-making, and are satisfied with the care you receive from your doctor (73%).
  • Some of you feel that your treatment goals don’t match your doctor’s plan (34%), or that you don’t spend enough time with your primary doctor during visits (36%).

Peer support:

  • For 47% of you, friends are a source of support and help care for and manage your condition.
  • Most of you manage your condition with help from others (74%) and learn from the experiences of those who are part of online communities like PatientsLikeMe (69%).

If you were one of the many who contributed to this research – thank you. What you shared proved that the differences in empowerment levels across conditions warrant further study. That’s the power of your data in action!

 

 

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The power of your data: How it works for you

Posted December 13th, 2016 by

For these 24 Days of Giving, we’ve been sharing how patient data has the power to change healthcare for the better. But how does the data you donate work for YOU in your own health journey?

PatientsLikeMe members are starting to answer that as part of an ongoing initiative, giving us feedback about the benefits of learning, tracking and connecting on PatientsLikeMe. And no, we’re not trying to toot our own horn here – we’re trying to see how and where you get value from the site so we can do more of what we’re doing right and less of…well, all the other stuff.

Even though this research is far from over, we wanted to share a couple of highlights from the community.

So, what are members who’ve taken the survey saying? How has PatientsLikeMe helped you to better understand your condition or improve some aspect of your care? Let’s have a look.

Here are the top 3 things you understand better since joining PatientsLikeMe*:

  • How your condition(s) might affect you – 67%
  • What might help you live better with your condition(s) – 63%
  • Treatment side effects – 61%

Others include:

  • Available treatments – 61%
  • Important factors in making decisions about treatments – 57%
  • What might help you get better – 50%
  • How to deal with other problems in your life (e.g. stress, work, money) that may be caused by your condition(s) – 49%

Here are the top 2 ways your relationship with providers and symptom management improved*:

  • Had better conversations with your healthcare professionals – 52%
  • Managed your symptoms better – 46%

Others include:

  • Been better at taking your medication – 34%
  • Tried a new way to manage side effects – 31%
  • Asked to see a specialist doctor – 25%
  • Start a new treatment – 16%
  • Stopped a treatment – 15%
  • Changed your doctor – 13%

Top takeaway? Participating on PatientsLikeMe seems to be having some positive benefits to understanding your condition, managing your symptoms and communicating with your care team. Now that’s some pretty powerful stuff.

 

*Note: Of those who took the survey, approximately 6-8% missing for each question. Percents are calculated out of valid non-missing responses.

 

 

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24 Days of Giving: Halfway checkpoint

Posted December 12th, 2016 by

The midpoint. The halfway mark. Call it what you want, but we’re smack in the middle of 24 Days of Giving. So, where do we stand on the data donation front? Let’s take a look:

  • 12,340 treatment reports
  • 90,610 symptom reports
  • 72,593 health outcomes

So if you’ve been donating, keep at it. If not, why wait? Your data has power – just watch what some PatientsLikeMe employees have to say about it.

Every piece of health data you share on PatientsLikeMe over the next 24 days will contribute towards a $25,000 donation goal to Make-A-Wish® Massachusetts and Rhode Island. You donate your experiences that can help someone like you, and we’ll donate on your behalf to help fund life-affirming wishes for seriously ill children. 

 

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Meet Kimberly from the PatientsLikeMe Team of Advisors

Posted December 8th, 2016 by

We’d like to introduce you to Kimberly (firefly84), another member of your 2016-2017 Team of Advisors. Kimberly lives with autonomic neuropathy and describes what it’s like to manage a condition that is at times invisible, how she tackles each day by taking “baby steps” and focusing on the moment at hand.

Before becoming ill, Kimberly worked as a registered nurse and discusses the challenging transition from “caregiver to the one needing care.” As someone who knows firsthand what it’s like on both sides of the patient/care team relationship, Kimberly shares why it’s important to her to help change the system and, in doing so, leave “a lasting impact that will benefit all generations to come.”

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Prior to getting ill, I was working as a Registered Nurse in all areas of the hospital and had recently started doing home health and hospice as well. Suddenly I went from caregiver to the one needing the care. It’s been hard giving up the control factor. Healthcare professionals in general make horrible patients because we think that we should dictate our care. To a certain extent that works, but it also doesn’t allow you to just be the patient. Instead of sitting back and letting people take care of me, I have continued to take on multiple roles; ones that I probably shouldn’t be, but ones that I don’t know how to let go of. There are days when having medical knowledge is wonderful and it has saved me doctor appointments by calling in and saying that we need to adjust medications. But then there are also days when I wish I didn’t know anything about medicine, because then this condition wouldn’t be quite as scary.

A portion of this condition is invisible, so there are some days that I look fairly healthy. The whole “ill patient” scene needs to change. We need to be seen as real people, with lives that are affected in every aspect. We have spouses, families, financial responsibilities, and we still want to contribute to society. We didn’t pick our conditions; our conditions picked us. This isn’t how any of us saw our lives unfolding. These are the cards we got dealt. Society needs to be more accepting of chronic illnesses and understanding that every day is a challenge.

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

Automatic…think of the things your body does automatically. Now take those things (blood pressure, heart rate, sweating, temperature regulation, digestion) and put them into a blender. What comes out the other side? A mess…that’s how I think of it. The “rest and digest” (parasympathetic) and the “fight or flight” (sympathetic) nervous systems no longer communicate with each other. Think of the adrenaline rush and pounding, racing feeling in your chest if you were in an accident…that is what happens to me if I’m in small group with mildly increased noise levels. My body has become incredibly hypersensitive and totally unpredictable. This means that my heart rate and blood pressures basically do whatever they want, whenever they want (high or low). I lost the ability to sweat on 90% of my body, so anything involving outdoors is out of the picture once it is above 65 degrees. My worst symptom that is the most visible to people around me is flushing. Think of how hot a sunburn gets…now think of having that heat and redness for 16-20 hours per day, every day. Many things trigger it (showering, washing my hands, walking by the stove, having the sun shine on me). The hardest thing is that none of my symptoms are predictable, so I always have to plan ahead for multiple scenarios. That’s me…the blender scenario!

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

Take a deep breath. Focus on this moment, and this moment only. We can’t live in constant fear of what hasn’t happened yet. There are so many unknowns; do your research, find a support system. Hold tight to family and friends as they will be your rocks going forward. Always have one or two people that you can call when you’re having a bad day and cry your eyes out for no reason at all. Finally…baby steps; this is my mantra. Sometimes going one day at a time is too much. So you go one moment, one second, one minute, one hour, and eventually you will have gotten through the day…with BABY STEPS! As long as you can find one positive thing each day, you can get through anything. Sometimes it can be something as simple as the sky was blue today or maybe your pain improved for an hour. Don’t set big goals because if you don’t achieve them you feel like you have failed, but if you set small obtainable goals, then you have succeeded and most of all, you have survived.

What made you want to join the PatientsLikeMe Team of Advisors?

Navigating healthcare is like trying to find a needle in a haystack. You get told that you have an illness, hopefully get a referral to a specialist, maybe get an official diagnosis, and then you’re on your own. Nobody tells you how to deal with insurance companies, how to expedite prior authorizations for procedures or medications, how to establish a good rapport with your healthcare team, or where to find resources and advocates. You are taken to the edge of a cliff and then told good luck. At least that has been my experience with several of my health issues.

Having worked within the healthcare system has given me an enormous amount of knowledge regarding how to successfully navigate the twists and turns. I wanted to join the Team of Advisors because I get so angry when the healthcare system fails patients time after time. I want to help change that, because it isn’t fair to anybody. We really can change things, but it has to be one step at a time. Advocating for community members and anybody with a condition is a lot like organ donation. Yes, we’re doing this for everyone right now, but we are leaving a lasting impact that will benefit all generations to come. That’s my reason!

 

 

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PatientsLikeMe Co-Founders Jamie and Ben Heywood Win International Alliance of ALS/MND Associations 2016 Humanitarian Award

Posted December 8th, 2016 by

DUBLIN—December 8, 2016—A decade after their work sparked a revolution in patient empowerment and patient-centered medicine, PatientsLikeMe co-founders Jamie and Ben Heywood were awarded the 2016 Humanitarian Award by the International Alliance of ALS/MND Associations.

Inaugurated in 2000, the Humanitarian Award recognizes and encourages contributions to the fight against Amyotrophic Lateral Sclerosis/Motor Neurone Disease (ALS/MND) and is awarded to those whose work is of international significance for people affected by ALS/MND.

In presenting the award, the Alliance’s citation acknowledged the founding of both the patient network PatientsLikeMe and the ALS Therapy Development Institute (ALS TDI), the world’s first non-profit biotechnology company. “When their brother was diagnosed with ALS at the age of 29, James Allen Heywood and Benjamin Heywood were devastated at his prognosis and at the lack of effective treatments for the disease. They saw firsthand how isolating ALS/MND can be. They took up these challenges as a family and, with family and friends, founded two organizations: ALS TDI, tasked with finding effective treatments for the condition, and PatientsLikeMe, to tackle social isolation and to collect data on what other drugs, interventions or supplements might make a difference to those with ALS/MND.”

Jamie Heywood thanked the association on behalf of his family and PatientsLikeMe members and staff and said the company is ready to lead the next decade of advancements in research and medicine, with and for patients. “We changed the rules by helping patients digitize and share their experience so they could make more informed decisions about how to live with and treat their condition. Now we’re embarking on the next stage of the journey by piloting biomarker discovery in ALS and other conditions. We hope many more patients will join us as we work together to find new answers.”

More information about how to be part of PatientsLikeMe’s upcoming research in ALS/MND is available at www.patientslikeme.com/advanceals.

About PatientsLikeMe
PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 85 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact                                                                                                                Margot Carlson Delogne
PatientsLikeMe
781.492.1039
mcdelogne@patientslikeme.com

 


The power of your data: Improving clinical trials

Posted December 6th, 2016 by

For these 24 Days of Giving, we’re rethinking what it means to give and how the power of patient data can change healthcare for the better. Another example of the impact your data can have? Making the clinical trial experience better for patients like you.

Now let’s be real, that’s no short order. So where do we even start? With you, and every new member who joins the community. Every day, members are sharing their thoughts on trials, what would make them most likely to take part, and what would turn them off. It’s an ongoing research experience, but let’s take a look at snippet of results so far:

4,718 members have taken part so far…

How do you learn about clinical trials?

  • 59% learned about a trial from your health team, 24% via the web.
  • 24% of you said you first thought of participating in a trial without suggestion from anyone else. For those who participated in past trials, the first person to suggest that you participate in a trial was a doctor (43%) or another healthcare provider (19%).
  • Those of you who took part in clinical trials decided to because of your own desire (80%).

Key takeaway: Most people are still finding out about trials through their care teams or providers, but when it comes to actually deciding to take part, it’s your own desire that motivates you.  

What are your impressions of clinical trials?

Side note: These results are just from those that have taken part in a trial.

  • 55% of you were very or extremely satisfied, and 51% would tell other patients about the trial. Not bad, but not awesome.
  • 9% considered dropping out — side effects and worsening of overall health after trial were the main reasons.
  • You said the best parts of the trial were the opportunity to contribute to science and medicine (78%), and learning more about your condition (46%).
  • You said that the worst parts of the trial were the chance of being given an inactive drug or placebo, experiencing negative effects and discomfort with study procedures.
  • Only 38% of you recall being told about the results. Yikes!!! As you know at PatientsLikeMe, we have a give data, get data philosophy. And you can better believe we work with our partners to get on board with that philosophy, too.

Bottom line: Trial results need to get back to those that take part. Period.

Thanks to all who’ve participated and put the patient perspective into improving clinical trials!

 

 

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The power of your data: Members define compassionate care

Posted December 5th, 2016 by

For these 24 Days of Giving, we’re rethinking what it means to give and how the power of patient data can change healthcare for the better. Here’s a snapshot of your data in action.

Let’s talk compassionate care. Our partners at the Schwartz Center for Compassionate Healthcare had developed a scale based on input from 510 patients, 800 doctors and other caregivers to define compassionate care. But they wanted feedback from PatientsLikeMe members to validate this work and make sure it really reflected the patient voice. Every day, members like you team up with us and our partners, adding your experience to help improve measures just like this one.

So, how did it go? First,  members first shared what compassionate care means to them and if they thought the scale could be improved, and then a second group helped to see if the scale measured compassionate care and if it did so consistently.

Here are some top takeaways:

23 members weighed in on the first phase of the project, defining compassionate care.

Quick research insight: you might be wondering, “why only 23 members?” Well, the first phase of a project like this is sometimes called concept elicitation. That’s just a fancy way of saying you’re getting open ended responses from people, and not having them check an answer box. When that kind of research is done, fewer responses are needed to capture the main ideas.

How do members define compassionate care?

  • Many shared that continuity of care and communication between their providers made a difference in whether they felt they received compassionate care.

Need an example? Here it is again in members’ own words:

“I had two surgeries within days of each. Therefore, two different surgeons handling my care. One was incredibly compassionate, the other, not so compassionate.” – PatientsLikeMe member

I believe that too many cooks in the kitchen spoil the soup. I have a PCP, Cardiologist and a couple of other specialists involved in my care. When I get very sick, I am told to go to the ER. No one in the ER knows me and it is frustrating and cannot be safe. Tell a same story to 5 different people and you will get back at the end another completely different story from each one. A person should be able to have their own doctor manage their care, available to take over.” – PatientsLikeMe member

How can this scale be improved?

  • Many understood the questions, but felt they sometimes either didn’t apply to their situation, or they thought that their situation was difficult to summarize.
  • For those with multiple doctors and/or conditions, they found it difficult to decide who or which condition they should evaluate:

“State explicitly who we are rating…the clinician in charge of our last hospitalization or the clinician we normally see to treat our illness.  It is often different people, as it was in my case.” – PatientsLikeMe member

  • While they found the wording of some questions unclear, overall, members thought that the Schwartz Center Compassionate Care Scale did reflect what matters most to them.

For the second part of the research project, we asked members to actually answer and complete the measure. 

163 responded to the questions. How they answered helped us understand if the Schwartz Center Compassionate Care Scale measured compassionate care, and if it measured it consistently.

Leading the way (not always a good thing)

40% responded in the higher, positive range when asked if their healthcare provider “treated you as a person, not just as a disease” and whether they “showed respect for you, your family and those important to you.”

FYI: Sometimes when a large proportion of people answer the same response option on a questionnaire, it may indicate that the question is asked in a way that could lead people to answer a certain way, or it could mean that there are too many response options for a question. We’ll have to do some more testing to confirm if this is the case.

On a solid foundation

The measure was found to have good measurement properties, meaning that the different items seem to “hang well” together and to measure the same concept. Members also answered consistently when asked to complete the questionnaire twice.

Making some tweaks

But there’s always room for improvement, like taking another look at the response options for the questions. It may be that there are too many answers to choose from for the questions. Or the measure could also be improved by adding questions measuring the lowest levels of compassionate care.

The gist of it: Your voice matters in research – whether validating a measure like this one, giving feedback on a potential clinical trial or shedding light on life with your condition – there’s nothing like real patient data to affect positive changes in healthcare.

Thanks to all who participated and put the patient perspective into compassionate care!

 

 

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Crohn’s and Colitis Awareness Week

Posted December 2nd, 2016 by

Image courtesy of the Crohn’s & Colitis Foundation of America

This week is Crohn’s & Colitis Awareness Week. The Crohn’s & Colitis Foundation of America (CCFA) wants you to be #IBDvisible to raise awareness of Crohn’s disease and ulcerative colitis.

Speak out, step up, and stand out. How? Join the movement:

  • Use the hashtag “#IBDvisible” to let the IBD community know you are proud to stand strong beside them
  • Share your story and use your voice to raise awareness
  • Join the CCFA Thunderclap on social media December 7th at 12pm

And if you’re living with either condition, be sure to connect with the 4,500+ Chron’s members or 1,350+ colitis members on PatientsLikeMe.

Let’s be #IBDvisible, together.

 

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Meet Jim from the PatientsLikeMe Team of Advisors

Posted December 1st, 2016 by

 

We recently announced the 2016-2017 Team of Advisors, and now we’ll be introducing each member so you can get to know them better as they kick off their year-long term. First up is Jim (jangrilah), a member of the MS community. Jim is a new grandfather, a husband and an international executive and leadership development and change management consultant.

He sat down with us recently to talk about finding appreciation in the “upside-down” reality of life with MS. Below he shares his experience advocating for himself and how he built a strong relationship with his doctor.

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

Family moments.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Mobility challenges limit what I can do/where I can go. In the U.S. things are pretty good; overseas, people tend to recoil from any appearance/behavior that strays from the “norm.”

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

MS produces a wide variety of often invisible but strange and obtrusive sensations and symptoms that aren’t described in the owner’s manual that came with your body. Creates a new normal and a new sense of reality, and makes life a bit like being an undercover spy.

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

Take a deep breath. Learn what you can about the condition, but mostly keep your head about you: don’t allow the shock to drive you crazy and/or make you feel that things are worse than they actually are. Learn to appreciate the upside-down ways in which it can help you focus on what’s REALLY important to your quality of life, and take an interest in the unusual ways in which your body can change from day to day, even moment to moment.

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

Actually, this hasn’t been very important for me. I’m much more interested in how the things MS makes me experience give me new/unusual perspectives on life and relationships that others can learn from.

Recount a time when you’ve had to advocate for yourself with your (provider, caregiver, insurer, someone else).

The oncologist who diagnosed my Chronic Lymphocytic Leukemia was highly recommended to me by my GP based on his clinical expertise. But he came initially across to me as arrogant, cold, in a hurry, and not the least bit interested in helping me absorb the news emotionally. At the beginning of our second appointment, I took him aside, praised his clinical expertise, insisted that, even so, we could only proceed together if he listened to something I had to say, and then — after he signaled his willingness to hear me out — described the kinds of interaction/treatment I would need him to work on if he wished to continue treating me. Over the next several months, I “taught” him how I wanted him to interact with me; he worked at learning, and we eventually became good friends.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

It has alerted me to possible new treatments and mobility solutions.

How well does PatientsLikeMe communicate its mission and activities to members and stakeholders?

I somehow missed some of the most unique and valuable things that PLM brings to the table, so I’d like to see the Team of Advisors work with PatientsLikeMe staff to enhance and clarify PatientsLikeMe’s messaging.  

How should PatientsLikeMe make the most of its Team of Advisors? 

A lot more could/should be done to set the Advisors up as a true TEAM (as opposed to a collection of individuals serving as sounding boards) who adopt and pursue their own projects in collaboration with PatientsLikeMe leaders/staff to undertake valuable enhancements to the site and its patient community that might not yet be on PatientsLikeMe’s radar.

What made you want to join the PatientsLikeMe Team of Advisors?

I have personally benefited from interactions with PatientsLikeMe members but also have observed ways in which the site could provide better support and more reliable information. Also, numerous family and friends have harped on how much they admire how I handle my various conditions: I figured the Team of Advisors might be an opportunity to see if I actually had anything to offer that might be of value to other patients.

 

 

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