10 posts from September, 2013

Sleep survey results: infographics take-3

Posted September 27th, 2013 by

Happy Friday! Here’s the final round of the PatientsLikeMe sleep survey infographics. On Tuesday, we shared info about general sleep issues, and on Wednesday, we learned how these problems affect the daily lives of people living with chronic conditions. Now, see how the PatientsLikeMe community compares to a study conducted by the National Sleep Foundation (NSF). Don’t forget to share your own experiences through #areyousleeping on Facebook, Twitter and Pinterest. Together, we’re learning about how sleep impacts the conditions we live with everyday, and how our health affects how we sleep.

 

share5 share6 share7 share8

Survey Methodology
Between July 15 and 30, 2013, PatientsLikeMe invited recently active members to participate in the PatientsLikeMe® survey; 5,256 members worldwide completed the entire survey. The mean age of respondents was 51 years (SD: 13); the age range was 18-87; the margin of error was 0.3 year(s); one survey respondent did not provide age. The survey represents a summary of the current insomnia experience as shared by patients with chronic illness.


Sleep survey results: infographics take-2

Posted September 25th, 2013 by

As promised, here’s the next round of PatientsLikeMe sleep survey infographics. Yesterday we shared some about general sleep problems and how long they last. Today, it’s all about how sleep impacts your sex life, ability to drive a car and overall mood. Don’t forget to share through #areyousleeping on Facebook, Twitter and Pinterest so everyone can learn more about how sleep (or lack thereof) impacts our health, and how the conditions we live with every day can affect how we sleep.

share4 share10

share11 share12

Survey Methodology
Between July 15 and 30, 2013, PatientsLikeMe invited recently active members to participate in the PatientsLikeMe® survey; 5,256 members worldwide completed the entire survey. The mean age of respondents was 51 years (SD: 13); the age range was 18-87; the margin of error was 0.3 year(s); one survey respondent did not provide age. The survey represents a summary of the current insomnia experience as shared by patients with chronic illness.


Sleep survey results: infographics take-1

Posted September 24th, 2013 by

Just yesterday, we announced the results of the PatientsLikeMe sleep survey and found that a bad night’s sleep is the norm for people with health conditions. Over the next week, we’ll be sharing some sleep survey infographics with our blog followers and the PatientsLikeMe community. Here are a few to kick us off…

share1

share2

share3

 

PS- Don’t forget to share them on your own Facebook, Twitter and Pinterest pages (#areyousleeping) so everyone can learn more about how sleep (or lack thereof) impacts our health, and how the conditions we live with every day can affect how we sleep.

Survey Methodology
Between July 15 and 30, 2013, PatientsLikeMe invited recently active members to participate in the PatientsLikeMe® survey; 5,256 members worldwide completed the entire survey. The mean age of respondents was 51 years (SD: 13); the age range was 18-87; the margin of error was 0.3 year(s); one survey respondent did not provide age. The survey represents a summary of the current insomnia experience as shared by patients with chronic illness.


Bad night’s sleep is norm for people with health conditions, according to PatientsLikeMe survey

Posted September 23rd, 2013 by

Majority of Members Have Chronic Sleep Problems That Point to Insomnia, But They Aren’t Diagnosed With The Condition

 

CAMBRIDGE, Mass.— September 23, 2013—Results from a new survey of 5,256 PatientsLikeMe members around the world reveal nearly one-third of respondents—people who live day to day with life-changing conditions—never (5%) or rarely (25%) get a good night’s sleep. Nearly half (44%) wake up a lot during the night every night, or almost every night. The survey also found that sleep problems for the group are chronic, with more than half (53%) saying their sleep problems have lasted for more than a year. Here are the survey results and graphics.

“It’s challenging enough to live with a condition that affects your day-to-day life, but now on top of that we’ve uncovered a hidden burden that has a major impact on patients’ well being,” said PatientsLikeMe Research and Development Director Paul Wicks, Ph.D. “It’s vital that patients and doctors understand how lack of sleep may affect other illnesses.”

The survey offers a rare glimpse into the sleep experiences of patients with chronic illnesses and is part of a broader study of sleep issues that PatientsLikeMe has conducted over the last five years. PatientsLikeMe has now amassed one of the largest collections of patient-specific sleep data in the world representing the experiences of 65,000 patients. Half of these patients reported having moderate to severe insomnia, which prompted the survey to deepen understanding of the relationship between sleep and other illnesses. PatientsLikeMe is continuing to analyze the complete dataset and plans other work to study how insomnia relates to specific diseases and conditions. The company expects to publish the complete findings in the future, but the survey results released today show that lack of sleep affects patients far more than the general population.

Sleep Problems vs. Insomnia
The National Sleep Foundation (NSF) says insomnia is characterized by four primary symptoms, including waking up feeling unrefreshed, difficulty falling asleep, waking in the middle of the night, or waking too early. The NSF says a person is at risk of having insomnia if they experience one or more of these symptoms on a regular basis, and if the symptoms impact their daily functioning “a lot” or “extremely.”

Only a small percentage (13%) of the PatientsLikeMe respondents said they have been diagnosed with insomnia. However, among the undiagnosed respondents (n = 4,048), 73% reported they had the symptoms that indicated they are at risk of having insomnia.

Sleep in the U.S.
In a 2005 study of adult sleep habits and styles, the NSF surveyed 1,506 people in the U.S. about their experiences with the four symptoms of insomnia. Based on the NSF definition, results from PatientsLikeMe survey respondents in the U.S. (n=3,284) show that members are almost nine times more likely to be at risk of having insomnia than the general adult population. They also show that PatientsLikeMe members with health conditions experience any one of the four symptoms of insomnia at twice the rate of the general adult population.

Sleep Affects it All: Driving, Relationships and Sex
As part of a series of questions on the impact of sleep on their emotional, physical and social well-being, respondents answered questions about topics such as driving, relationships and sex.

In the survey, people who reported at least a mild sleep problem (n=3,975) were asked how it affects their driving. Of the 81% who drive, 36% have felt drowsy either sometimes, often (10%) or very often (7%) while driving; approximately one out of three (31%) admitted to nodding off or falling asleep at least once while driving because of their sleep problem.

Regarding relationships, 61% of respondents who experience sleep problems said their workmates, family or friends would describe them as “a bit” or “super” irritable; 21% say they’d be perceived as “irritable as usual.”

When the questions got more intimate, two thirds of the respondents with at least mild sleep problems answered how lack of sleep affects their sex life. Of those, one third (32%) said their sex life is negatively affected by their sleep problems, while 27% said it’s the same. Just 17 people, or 0.43%, reported an improvement. The rest answered not applicable, or didn’t want to say.

Survey Methodology
Between July 15 and 30, 2013, PatientsLikeMe invited recently active members to participate in the PatientsLikeMe® survey; 5,256 members worldwide completed the entire survey. The mean age of respondents was 51 years (SD: 13); the age range was 18-87; the margin of error was 0.3 year(s); one survey respondent did not provide age. The survey represents a summary of the current insomnia experience as shared by patients with chronic illness.

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. PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 35 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

###

For additional PatientsLikeMe news, visit news.patientslikeme.com


Restless Leg Syndrome/Willis-Ekbom Disease Awareness Day is on Monday

Posted September 20th, 2013 by

Did you know that PatientsLikeMe is located up in Boston? For us New Englanders, the end of September isn’t just about falling leaves and colder weather; it’s also about Restless Leg Syndrome (RLS) Awareness Day. On September 23rd, medical organizations all across the world will join together to raise awareness for this health condition, which affects ten percent of people in the United States and millions more in other countries.[1]

RLS

RLS, also known as Willis-Ekbom Disease (WED), is a neurological condition that primarily affects a patient’s legs and causes an irresistible urge to move them to relieve unpleasant sensations. All this week, we are encouraging everyone to help raise awareness and share their experiences with RLS. And we’re not the only ones – the Willis-Ekbom Disease Foundation is spreading the word by launching a brand-new website to teach people everything there is to know about RLS. The International RLS Study Group is also participating in a series of conferences in Valencia and Vienna to share research findings and other information with the worldwide medical community.

There are more than 1,500 members in the RLS community on PatientsLikeMe who are sharing their experiences with medication, side affects, symptom management and more. Together, we’re learning about RLS and what it’s like to live with this neurological condition.

Find and connect with other patients like you in our neurological and brain forums, and click here to get the full scoop on RLS Awareness Day.


[1] http://www.ninds.nih.gov/disorders/restless_legs/detail_restless_legs.htm


The Open Research Exchange- A talk with pilot researcher William Polonsky, Ph.D., CDE

Posted September 14th, 2013 by

You’ve probably seen some recent posts about PatientsLikeMe’s new Open Research Exchange. Medical researchers will be using our ORE website to pilot, deploy, share and validate new ways to measure diseases. And PatientsLikeMe members will have an opportunity to give feedback on their work, putting them – the patients – at the center of new medical research.

We wanted to take a quick second to introduce our blog followers to ORE pilot researcher Dr. William Polonsky and share his recent podcast interview with everyone. One of the first clinical health psychologists in the U.S., William has dedicated his career to helping patients with diabetes, conducting research to examine the disease’s critical psychological factors, and lecturing and training healthcare professionals so they can help patients help themselves. The scale he wants to develop on ORE is what he calls the WHY STOP scale. It’s an attempt to understand if you’re eating a meal, how do you decide you’re done?

round-portrait-wpolonsky-f6b0fbe9ef8b3cfe227e44084fb01bbf

Most important, William wants to know how new diabetes medications seem to affect people’s satiety, or how full they feel when they eat. On ORE, William aims to create the first instrument to understand when and how these medications affect people, and how other patients can make better use of them.

We’ll be sending out invites next week, so if you’re living with type 2 diabetes and want to add your voice to William’s research, just create a PatientsLikeMe profile. Already a member? That’s great! Just be sure to sign into your profile this weekend and we’ll send an invite along.


Epilepsy “Rescue Medication” Survey results are in

Posted September 13th, 2013 by

PatientsLikeMe recently partnered with Acorda® Therapeutics to research how epilepsy patients respond to seizures using rescue medications, and we’re happy to announce that the results are in. Rescue meds are a type of medication used once a seizure starts to help end it faster or prevent further seizures.

MS

Has there been any 24-hour period in the last 12 months when you experienced multiple seizures, despite taking your daily anti- seizure medication?

 

We’d like to thank the more than 500 PatientsLikeMe epilepsy members who participated in the survey and got us to our community goal for the study. And as promised for reaching our goal, we’ve donated $2,500 to the Epilepsy Foundation for further research.

At PatientsLikeMe, we know every piece of data, no matter how small, helps paint a better picture of what it’s like to live with a condition like epilepsy. Your contribution will help other patients learn more all while advancing medical research. Thanks for your contribution.

Click here to download the complete survey results.


Patient-focused organizations join forces to build awareness and participation

Posted September 10th, 2013 by

The innovative medical research philanthropy Cures Within Reach has announced a marketing partnership with PatientsLikeMe to work together to improve patient lives.

Sep. 10, 2013 – SKOKIE, Ill — Cures Within Reach, a non-profit focused on research to repurpose existing compounds for new and immediate use, and PatientsLikeMe, a patient network and real-time research platform, are both thinking out of the box to help patients get what they need in today’s challenging healthcare climate.

Cures Within Reach (www.cureswithinreach.org) is dedicated to saving lives of patients with both complex and rare conditions by sourcing, funding and stewarding research that repurposes FDA-approved drugs, devices and nutriceuticals.  Anecdotally described as “teaching old drugs new tricks,” companies and research institutions rarely embrace this methodology due to low profit potential, while the potential for creating effective and affordable cures or treatments for patients is very high.  Ideas for these projects come from researchers, clinicians and sometimes patients themselves.

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.

The initial partnership will consist of cross-marketing programs to drive awareness and participation.  “Cures Within Reach is leading the way in a unique research model that makes a tangible difference for patients today.  We are happy to connect with an organization whose work so directly supports our patient community,” says PatientsLikeMe Executive Vice President of Marketing and Patient Advocacy Michael Evers.

Dr. Bruce Bloom, President and Chief Science Officer of Cures Within Reach, shares that moving forward, CWR will “find collaborations with PatientsLikeMe and their powerful patient community that not only increase awareness, but also ultimately strengthen each organization’s research work and patient impact.”

To learn more about PatientsLikeMe, visit www.patientslikeme.com

To learn more about Cures Within Reach, visit www.cureswithinreach.org


It’s Global Pulmonary Fibrosis Awareness Day!

Posted September 7th, 2013 by

gpfad_logo_rbg

Do you know someone with pulmonary fibrosis? Thanks to the Pulmonary Fibrosis Foundation, today – Sept 7th – is dedicated to raising awareness about this condition and sharing the stories of patients living with PF. It’s Global Pulmonary Fibrosis Awareness Day, and we want to do our part to help raise awareness of this lung condition. Pulmonary fibrosis (PF) causes scarring and thickening in deep lung tissue over time.

We recently announced that the PatientsLikeMe community has grown to include more than 1,000 patients with idiopathic pulmonary fibrosis (IPF). IPF refers to cases where the cause of the condition is unknown, and it affects over 100,000 people in the United States alone.[1] Our collaboration with Boehringer Ingelheim has made the acceleration to enhance our community for PF patients possible. So for Global Pulmonary Fibrosis Awareness Day, we’d love to share what we know about this condition, people’s experiences with it, and the stories behind the people living day in and day out with the disease.

More and more IPF patients are sharing their real world experiences on PatientsLikeMe, monitoring their own health while connecting with others just like them. We’ve done a series of blog interviews with our members, including Lori, Kim, Jeff and Ian, as well as other patients like Sarah and Keith.

Beyond the stories, our members are sharing experiences about what it’s like to live with their IPF. Here’s a snapshot of what we’ve learned about their real-world experiences, including a quote from Lori, an interviewee and amazing individual who was diagnosed with IPF in 2011 and has been connecting with PatientsLikeMe members ever since.

PatientsLikeMe-PF Community

As the PFF says, today is about sharing stories and raising awareness of a condition that affects over half a million Americans. You can help by sharing your story and experience here and through campaigns run by the Pulmonary Fibrosis Foundation and the Coalition for Pulmonary Fibrosis.

Every story, every voice, and every experience matters when coming together to make a difference for pulmonary fibrosis.


[1] http://ghr.nlm.nih.gov/condition/idiopathic-pulmonary-fibrosis


“I do not want your pity. I just want understanding.” An interview with alkaptonuria patient and PatientsLikeMe member Carolyn

Posted September 4th, 2013 by

Do you know what alkaptonuria (AKU) is? If you don’t, you’re not alone. AKU is a rare but devastating condition that causes severe, early onset osteoarthritis. It also causes cardiovascular problems, such as heart disease, kidney, bladder and prostate stones and other serious health complications.

AKU is so rare that it’s estimated to only affect about 100 people in the UK[1]. To help shine a spotlight and raise awareness, we’re talking with patients who have AKU and want to share their story with the community.

Say hello to Carolyn. She was diagnosed with AKU when she was only two years old. Carolyn recently took some time to talk with us about getting diagnosed, the daily challenges she faces and how connecting with others has affected her life. Check out what she has to share.

Can you tell us when you were diagnosed with AKU and a little bit about the process of finding a diagnosis?

Fortunately, I was diagnosed when I was about 2 years old. It was by chance in a way. My aunt noticed that my nappies were brown and mentioned it to my parents. On a visit to the pediatrician whilst my regular doctor was away and had someone fill in, one of my parents happened to mention the brown nappies just as we were about to leave. It just so happened that that doctor had recently learned about AKU. He knew right away what it could be. I was tested for AKU, as were my parents and other family members. I was then followed by Dr. Charles Scriver in Montreal who is well known for his contributions to inborn errors of metabolism. (I am actually in one of his books!)

On your PatientsLikeMe profile you mention you have a toddler. Can you talk about some of the daily challenges of living with AKU while raising a child?

There were concerns from the beginning of my pregnancy because my spine is fragile. Fortunately, I did extremely well during my pregnancy as I didn’t gain a lot of weight and I think the hormone, relaxin, helped with the prevention of a lot of back and joint pain. I did have to use a cane occasionally and I got a belly support band. While pregnant I researched as much as I could to find out about baby products that would make life easier and save stress on my body. We just tried to problem solve before issues would arise or as needed. My son was premature and very small so he was easy to care for a long time, and as he grew we adapted things, like raised the crib and carried him out to the car, rather than carry him in his car seat. We have always encouraged him to be more independent (ie. on stairs and getting in and out of the truck). When my son was still young, an Occupational Therapist came to the house but she wasn’t sure how to help me.

My son is now 2 ½ and I think my greatest challenge at times is the fatigue. I just try and get enough sleep every night. If my son needs to be lifted and someone is around I ask them to do it. If I have a lot of errands I try to leave my son with my parents and go out on my own. When he needs a hug or comforting I get down on his level rather than picking him up.

I am just entering my second trimester of my second pregnancy, so the past 2 months have been challenging with morning sickness and fatigue but I have had excellent support from my family. On bad days my parents would take my son to the park or on errands. It helps that he is their only grandchild and they adore him! I also now have some arthritis in the hips and that sometimes flares up but you just get on with it. Now that I am feeling better I am looking into prenatal yoga to help with my body and fatigue.

In some of your forum posts, you talk about getting acupuncture. How does that help you?

In December 2011 I jarred my right hip. There were many times when I could not weight bear, walking was a struggle or at times I simply couldn’t walk. I had a lot of pain. I tried for about 14 months to get it sorted with my Rheumatologist but unfortunately he wasn’t of much help. It was a very frustrating time. On my own I went to a physiotherapist. Success was limited and she said she could only help me so much. I then thought I would try acupuncture. What did I have to lose? Within 3 sessions of acupuncture and cupping the pain was gone and still 6 months later it has not returned. She said the ligaments were “jammed”, not moving as they should and she simply got them moving again. She also helped with my lower back pain and some shoulder pain.

What’s it been like connecting to others with AKU on PatientsLikeMe?

It’s been nice to connect with others on PatientsLikeMe. For years I didn’t know if what I was feeling at times was normal or not, if it was part of AKU. I find everyone is supportive and it is a place to be honest about how you are feeling, positive or negative. I like the forums to ask questions and to share things you may have not considered that may help make life easier or the pain more manageable. And people are always happy to share what works for them.

Many times in our interviews, we ask what someone thinks others who share their condition should know. But I’d like to ask instead, what’s one thing you think everyone who does not have AKU should know?

I found for a long time people, including close family members, didn’t get how bad the pain could be even with medical reports. It took a surgeon saying how bad my back was for my family members to realize that I was not exaggerating. I also try to tell friends that sometimes I can’t attend social functions because it’s a bad day (or time) and please don’t take it personally. For me AKU and the pain tend to come in peaks and valleys. I am not lazy. I have limitations. I am trying to accept them. I try to do as much as I can. Losing some of the independence I once had and valued or not being able to do the things I use to do is a very hard pill to swallow. My husband said because I look normal on the outside he sometimes forgets about my AKU and that I have chronic pain but he is reminded if he sees me limping or stooping. If you have been there for me on rough days you will never know how truly grateful I am. Lastly, I do not want your pity. I just want understanding.
If you’re living with AKU, find others just like you in our growing community on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forums.

Join PatientsLikeMe

 


[1] http://www.akusociety.org/what_is_aku