9 posts from October, 2013

World Psoriasis Day – Global access to treatment

Posted October 29th, 2013 by

World PSO Day

The international community is coming together today to raise awareness about psoriasis, and this year’s theme for World Psoriasis Day is ‘global access to treatment.’  The International Federation of Psoriasis Associations (IFPA) includes almost 50 member associations around world, including the National Psoriasis Foundation (NPF) right here in the U.S. They’re helping to spread the word about this chronic, autoimmune disease that affects more than 125 million people across the globe.[1] So what are the messages we’re all trying to get out there today?

 

  1. Raise awareness: to let people with psoriasis know that they’re not alone
  2. Improve access to treatment: to move it up on the healthcare agenda
  3. Increasing understanding: educate people about the condition so that they can discuss it openly
  4. Building unity among the psoriasis community: to provide a platform for the patient voice[2]

And here at PatientsLikeMe, the psoriasis community isn’t just raising awareness today; they’re doing it every day, all year round. Together, they’re learning to improve their quality of life and are paving the way to better care by sharing their experiences. Check out some of our member interviews that are up on the blog to get a glimpse of what living with psoriasis means to them.

Maria – The real me
David – I still haven’t given up hope
Erica – Finding peace and confidence

Raise awareness with one click – just click here and a tweet will go out from your own twitter account saying “Today is World Psoriasis Day and I’m sharing my story with @PsoriasisIFPA and the @patientslikeme #psoriasis community. RT #PLMer.” How easy is that!?

If you’re living with psoriasis, connect and share with more than 4,000 members in our growing psoriasis community. Use the symptom and treatment reports to learn more about your own health, and see how psoriasis affects other peoples’ daily lives, like jumping in swimming pools or going to tanning salons.


[1] http://www.worldpsoriasisday.com/web/page.aspx?sid=8538

[2] http://www.worldpsoriasisday.com/web/page.aspx?refid=10


Canary in a Coal Mine- Raising awareness for myalgic encephalomyelitis

Posted October 28th, 2013 by

Everyday on PatientsLikeMe, people just like you are sharing their experiences, contributing to real-time research and raising awareness, together. Jen is part of your patient community and is living with myalgic encephalomyelitis (ME), sometimes called chronic fatigue syndrome. She’s working on a new project called Canary in a Coal Mine to help shed light on this largely misunderstood condition.

“Three years ago I became devastatingly ill. Now, there is not a single waking moment when I don’t feel sick. When faced with what seemed like an insurmountable obstacle, I felt the only choice I had was to transform suffering into grace. I believe that by telling these stories, by showing the world what it really feels like to live life with ME, we can change forever the way the world sees this illness. And, by showing the true face of ME, maybe we can put an end to the many injustices that ignorance creates.” –Jen

 


Trying to put insomnia to rest – An interview on sleep with insomnia patient and PatientsLikeMe member Marcia

Posted October 23rd, 2013 by

Marcia

As part of our “Are You Sleeping?” initiative, we’re talking with different patients to learn what it’s like to live with a lack of sleep and how that impacts their health. Recently, we caught up with Marcia, a PatientsLikeMe MS community member (some of you might know her as gamma) and happy grandmother of 3 who has had her fair share of experience with insomnia. Marcia talked about her initial diagnosis, her treatment with Zolpidem and general advice regarding insomnia – scroll down to see what Marcia had to say!

 

When did you first start experiencing symptoms of insomnia? Were you ever officially diagnosed?

It has been a while, I think it was early in 2009, so I would have been 49 years old. The problem began with a feeling of bugs crawling all over my skin, and the resulting itch was insane and kept me awake. I did eventually get the itchy bugs under control but the inability to sleep persisted. My primary care provider diagnosed insomnia and prescribed a sleep aid.

I noticed on your health profile that you have been taking Zolpidem since March 2009. How often do you use a prescription drug to treat your insomnia? Has it worked for you?

I did indeed take Zolpidem every night for about 3 1/2 years, and I still was not sleeping as well as I would have liked, but if I skipped a night, I couldn’t get any sleep at all. About a year ago, I noticed that the Zolpidem was no longer working, and I made the decision to wean myself from the drug. I do still have a bottle of Zolpidem sitting on my nightstand, and on those occasional nights that I am desperate and can find no other way to fall asleep I will take one.

How does insomnia impact your MS? On the flip side, how does MS affect how you sleep? 

Hmmm….that is a good question. When I don’t sleep well I find the symptoms of MS much more bothersome. When I am tired I have less patience, and it is more difficult to maintain a positive attitude. The fatigue is amplified and I have less energy to deal with even the small stuff. On the flip side, it is often the symptoms of MS that cause my inability to sleep or stay asleep. Sometimes it is pain, sometimes it is the sensation of bugs crawling on the skin. When this happens, even if I manage to reign in the symptoms, I often spend the remainder of the night awake wishing I was asleep. It becomes a vicious circle; sleep deprivation amplifies symptoms, and symptoms increase the inability to sleep.

How has connecting with others on PatientsLikeMe who live with insomnia positively impacted you?

Connecting with others has many benefits. First, it helps me remember that I am not alone with this challenge. There are others that truly understand because they too are dealing with the same thing. Also, when sharing with others, I can glean ideas from them, including coping strategies that I might not have thought of on my own. And as an added bonus, I get to forge new friendships!

If you could give one tip to people who are living with insomnia, what would it be? 

Find someone to connect with! Either face-to-face or on the web. When there is someone who truly understands and is willing to be there when you need support, it will help keep you grounded and help to keep you from going crazy. It is so easy to lose your perspective when you are so tired that you can’t focus.


Hypertension on the Open Research Exchange- A talk with pilot researcher Tamara Kear, PhD., R.N., CNS, CNN

Posted October 17th, 2013 by

We’ve been talking about the new PatientsLikeMe Open Research Exchange on the blog over the past few weeks, and today, we’d like to introduce another one of the pilot researchers. In case you haven’t heard, our researcher partners will be using ORE to pilot, deploy, share and validate new ways to measure diseases. And PatientsLikeMe members will be able to give feedback on their work, putting them – the patients – at the center of new medical research.

tamara

Tamara’s background includes more than 20 years of practice as a nephrology nurse caring for patients with chronic kidney disease. Over the past three years, her research has focused on hypertension, one of the factors prompting a rise in kidney disease.

Tamara is developing a tool that will help practitioners see how well a patient is doing at home and identify barriers in managing hypertension. There are over 6,000 PatientsLikeMe members living with hypertension, and their feedback will be responsible for helping improve the quality of Tamara’s research. PatientsLikeMe members can give their feedback right to Tamara. They’ll be helping her create a better tool that can improve treatment for everyone living with hypertension.

We’ll be sending out invites over the next couple of weeks, so if you’re living with hypertension and want to give your feedback on Tamara’s tool, simply create a PatientsLikeMe profile and we’ll take care of the rest. If you’re already a member, sign into your profile and we’ll be sure to send you an invitation.


We’ve got a new look!

Posted October 15th, 2013 by

http://mousebreath.com/wp-content/uploads/2011/08/cat-rainbow-mohawk.jpg

You probably already noticed, but the PatientsLikeMe blog just got a facelift. It’s all part of our ongoing effort to create a better site experience, and the feedback we’re getting from members is guiding us every step of the way.

Check out all the upcoming site upgrades in Kim Goodwin’s post. Like she says, “nearly all of the changes you see in the next month will be cosmetic.” As always, we look forward to your feedback– let us know what you think of the new look. Together, we’ll continue to make the blog a great place to learn from real-world patient experiences and discuss the future of healthcare.


National Depression Screening Day and National Bipolar Awareness Day

Posted October 10th, 2013 by

Screen Shot 2013-10-08 at 11.46.51 AM

As part of Mental Illness Awareness Week, today is both National Depression Screening Day and National Bipolar Awareness Day. It’s all part of a larger effort to raise awareness about the mental conditions that affect the lives of millions of people around the world.

So what are the stats on depression?[1]

  • Depression affects as many as ten percent of all people in the United States, an incredible 30 million people
  • One out of four young adults will experience a depressive episode by age 24
  • 10% to 15% of all depressions are triggered by other medical conditions (such as thyroid disease, cancer or neurologic problems) or by medications

Here are the facts about bipolar disorder:[2]

  • More than 10 million Americans are living with this condition, which is characterized by extreme mood swings and intense emotional states
  • More than half of patients are diagnosed between the ages of 15 and 25
  • Bipolar disorder affects men and women equally

But at PatientsLikeMe, we know that patients aren’t just a statistic, and that facts don’t tell the whole story. Your journey is unique, and this is why more than 15,000 PatientsLikeMe members with depression and more than 4,000 with bipolar disorder are sharing their stories with the greater mental health community and talking about what it’s actually like to live with these two conditions. In the past, you told us what depression feels like, and today, we are raising awareness for depression and bipolar disorder and learning to live better. Click here to sign in and share your experience today.


[1] http://www.mentalhealthscreening.org/info-and-facts/depression.aspx

[2] http://www.nami.org/Content/NavigationMenu/Mental_Illnesses/Bipolar1/Home_-_What_is_Bipolar_Disorder_.htm


More than a pretty face

Posted October 7th, 2013 by

You’ll soon see some changes to the way PatientsLikeMe looks, including new icons, colors and fonts. This might look like we’re just redecorating, but these changes are fundamental to helping us make the bigger improvements you’ve been asking for. We’re still putting a bit of polish on it, but here’s an overview of what’s changing, and why.

What you’ve told us

To improve your experience on the site, our design team started by interviewing members from many of our communities. We asked about their health experiences in general, then we watched people use PatientsLikeMe. We saw where they got stuck or frustrated and listened closely to what they value most. There were a handful of things we heard repeatedly:

  • There’s a lot of great information, but it could be less cluttered and easier to navigate. Dealing with your health is overwhelming enough as it is.
  • The experience on tablets and phones could be better.
  • Most people are happy to share health data to support research, but it’s not always clear what’s most important to share and why. Entering some kinds of data can also be challenging.
  • Sharing experiences with other members is the best part of the site, so it should be even easier to find and connect with other people who have similar experiences and interests.

What’s changing

Nearly all of the changes you’ll see in the next month are cosmetic, but there are a few places where we’ve changed minor things to be more consistent across the site. The only navigation change you’ll see is in the forums. Because many of you use only one forum, we’ve condensed the left navigation menu into a single list at the top of the page. This leaves more room to read posts, especially for people who need to use larger fonts.

Site style

As for the visual changes, you’ll see that we’ve introduced a white header and a soft blue background texture. This mirrors the shift you may have noticed in our emails and our homepage, making the site more bright and airy.

We’ll now be using fewer colors and icons, so there’s less competing for your attention. The remaining icons are toned down. Soon, the less important links on each page will be getting a more subtle treatment, too. Later this year and early next year, we’ll be simplifying the bright, busy badges and using more consistent colors in the charts to draw your attention or communicate whether something is positive, negative, or neutral.

 

Site style 2

The page headers, buttons, and fonts are getting an upgrade, too. We’re slowly working through each page to make layouts as consistent as possible, so you’ll always know where to look when you want to take an action or see the next page of results.  We’ve also chosen a beautiful new typeface called Avenir Next, which has wide, simple letters that make it a pleasure to read on the screen.

What’s coming later this year and next year

We started with visual design because it will make many of the other upgrades easier. The updated controls are built to be touchscreen-friendly for mobile phones and tablets. Some of the rebuilt pages already resize themselves for smaller screens, and we’ll be upgrading the rest a page at a time. We also have an engineer focused on making our charts work on Apple iOS devices.

You might notice a few odds and ends that feel unfinished, like the badges and charts that clearly don’t match the new look. Unfortunately, trying to upgrade too many things at once tends to cause bugs. Updating a big site is like rewiring an airplane while it’s flying. We hope you can bear with us while we clean up the rough edges as quickly as possible.

Over the next few months, you’ll start seeing big enhancements to our news feeds and journals. First, we’ll make them easier to read and more relevant. After that, we’ll start adding richer content. We’ve noticed our members are making more and more use of these pages, so we think they’ll eventually become the place most people check out first.

We’ll also be making it much easier to share the data that’s most valuable for research (and explaining why it’s important). The three stars page will allow direct data entry and will stop asking for old data. Updating your treatments will get easier, too.

This is just a preview of what’s coming in the near future. We’ve heard all the feedback you’ve been sharing in the forums and in conversations with us, and we have more upgrades planned for next year.

Our members do amazing things together: raising awareness, sharing your experiences to support medical research, and helping each other live better every day. I think our planned improvements will make all of that easier over the next year or so. In the meantime, I hope these first steps will at least make it a little more beautiful.

PatientsLikeMe member KimGoodwin


Did you know it’s Mental Illness Awareness Week?

Posted October 4th, 2013 by

NAMI awareness

The U.S. Congress has recognized the week of October 6th as Mental Illness Awareness Week (MIAW), and if you or anyone you know is living with a mental health or neurological condition, it’s time to raise awareness and share your experiences.

Serious mental illnesses cover a lot of different conditions (including depression, schizophrenia and bipolar disorder), and they affect almost five percent of U.S. adults, millions of people.[1] What’s more, the symptoms for each condition described as a mental illness vary greatly. We all have a lot to learn about living with mental illness, and here at PatientsLikeMe, we believe one of the best ways we can live better is through sharing our journeys with one another.

So what else is going on during the week? For starters, MIAW coincides with National Depression Screening Day on October 10th, and you can find out more information about various screenings on the Screening for Mental Health website. The National Alliance on Mental Illness (NAMI) has dozens of other activities planned, and if you are wondering what you can do to help, check out their list of suggestions. You can even share the NAMI’s promotional poster with your friends and family.

The mental health community on PatientsLikeMe loves to chat about everything from general mood updates and photo-blogging to Ryan Gosling, and this week is the perfect time to join the conversation. On PatientsLikeMe, there are over 50,000 members sharing their experiences in the mental health and behavior forums – click here to add your voice to the community today.


[1] http://www.nimh.nih.gov/statistics/pdf/NSDUH-SMI-Adults.pdf


PatientsLikeMe in real life: Reporting back from RARE Patient Advocacy Summit

Posted October 4th, 2013 by

I was in Newport Beach, CA with one of our founders Ben Heywood, Brad Gescheider from partner marketing, and 125+ caregivers, researchers, patients, and advocates—including a member of PatientsLikeMe! MS member since 2010 slowmo_tam joined me for a day full of tips on patient advocacy, empowerment, and collaboration at the RARE Patient Advocacy Summit.

Ben was on a panel discussion about connecting communities online, which was a hot topic of the day, along with patient registries, and putting patients and their families first. @bheywood joined Kyle Brown of @patientregistry, @ThePatientsSide of @caresync, and @bar2bar2 to share about how open and patient-centric registries with information that all stakeholders care about—physicians, patients, researchers, caregivers—are better for research. Partnering expands resources to support a robust and large registries, and listening to what patients and families are saying creates a better set of information. Here’s a cool doodle from @dianedurand with a summary of the panel:

RARE

Collaboration is not only key when it comes to open registries, we learned on another panel with @billstrong of @gsfoundation, John of @Child_Neurology, @keeganj of @fpwr, and Sue of @TaySachs. Collaboration is also important for nonprofits and people thinking about starting a nonprofit. It’s not a zero sum game: when nonprofits collaborate, they can achieve more, together. Having a defined mission and clear intentions helps to define roles of each advocate and nonprofit. Here’s another doodle recap of that session.

The highlight of my day was definitely spending time with PatientsLikeMe member slowmo_tam. She has a wonderful presence in our MS community, and getting to know her in real life was a lot of fun. She said to me after the event “I feel like I’ve known you forever”—which certainly is the case. Online relationships are great, but there’s something special about putting a face to a name/screenname.

Lots of great energy and ideas from the patient advocacy summit. Thank you Global Genes | RARE Project for bringing us all together!

PatientsLikeMe member LizMorgan