11 posts from October, 2015

World Psoriasis Day 2015: Have hope, take action, make a change

Posted October 29th, 2015 by


Back in 2004, a group of patient associations from around the world launched World Psoriasis Day. Conceived by patients, for patients, World Psoriasis Day is an international event that aims to give a voice to the more than 125 million people worldwide living with psoriasis and psoriatic arthritis.

On October 29, the International Federation of Psoriasis Associations (IFPA), its members associations and support groups perform activities internationally to raise awareness of psoriasis and psoriatic arthritis. Each year, World Psoriasis Day has a theme, and this year’s focus is “Hope. Action. Change.”

So how can you get involved and help World Psoriasis Day reach its goals of raising awareness, improving access to treatment, increasing understanding and building unity among the psoriasis community?

Year-round, you can connect with others who understand what you’re going through on PatientsLikeMe. There are more than 5,300 PatientsLikeMe members living with psoriasis, and more than 1,600 members living with psoriatic arthritis. You can also check out some of our past posts on psoriasis, including member interviews (Maria, David, and Erica) and physician Q&As (Dr. Jerry Bagel and Dr. Steve Feldman)

Have hope, take action, make a change, together.

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A patient’s perspective: member Gary reports back from the FDA public meeting on Parkinson’s disease

Posted October 27th, 2015 by

Back in September, Sally Okun, Vice President of Advocacy, Policy and Patient Safety, and community moderator Molly Cotter, attended the FDA public meeting on Parkinson’s disease (PD) along with PatientsLikeMe member Gary (tupelo).

We posted some interesting developments from the meeting in the forum, but we also caught up with Gary for his perspective on the event. Here’s what he had to say:

Why did you want to be part of the FDA public meeting?

On the day I was diagnosed, back in 2012, I spent a great deal of time reflecting on my life. I thought a lot about how Parkinson’s disease will impact me and my family in the future. On that day I made a commitment to myself that I was going to take control, to the best of my ability, on the course of the disease progression, and would do anything possible to find a cure. I was determined to educate myself as much as possible about the disease, put together the best possible health care team, learn all I could about treatments currently in research, and participate in clinical trials. Parkinson’s was a new challenge in my life and I intended to tackle it like I would any other challenge that I had faced in the past. Along the way in this new journey, I became more publicly involved as a PD advocate, both for advancing research as well as supporting newly diagnosed patients. So, when I noticed the FDA announcement regarding the meeting, I decided to send in my comments and thoughts in hope that they might be helpful, to whatever degree, in moving research along for better treatments.

What did it mean to be accepted?

When I submitted my comments I never expected to be asked to participate on one of the panels, nor was I intending to attend the meeting, which was on the eve of a religious holiday. I was quite surprised when I was contacted by the FDA, but was caught in a dilemma. Participation meant missing an important time with my family. However, when we discussed it, we all agreed that this was such a great opportunity, and honor, to be able to represent the needs of the millions of Parkinson’s disease patients worldwide to the FDA. There was no way I could turn down that kind of invitation.

What was it like being there as a patient representative at the FDA event? Did you feel like your voice was heard?

I’ve participated in a number of seminars and conferences in the past, so there wasn’t much difference with the arrangement for this meeting. If anything, it was much more low key. Nevertheless, I definitely had a sense of awe when I arrived at the FDA complex. There were multiple buildings all over the sprawling campus. It immediately reminded me of the importance of this event compared to others I’ve attended. We were going to be presenting to the Director of the FDA’s Division of Neurology Products and nine other senior staff members. This is about as high up as we could go in our advocacy to advance Parkinson’s disease research.

During the meeting, it was difficult for me to tell how our presentations were going and whether they would have an impact on the FDA’s staff, although it appeared to me that they were listening intently. I was certainly concerned about the limited amount of time I had to speak. Several days later, though, I watched the webinar presentation of our event and I felt that we hit on the large majority of the most important areas of concern that our community has regarding current and new treatments. Only time will tell if the FDA will act accordingly with our hopes and suggestions. One small item that I noticed which suggests that they were listing involves a question on the Patient Questionnaire at the meeting. We were asked to choose from a list of Parkinson’s symptoms the ones that were most impactful on our lives. In my presentation, along with several of the other panel members, we noted that they didn’t include pain or orthostatic hypotension, two very common symptoms, on their list. I did, however, see that on the new follow-up survey the FDA is conducting, they have added both symptoms to the bottom of the list. So, at a minimum, they were listening as we spoke about these debilitating symptoms.

What did you learn while you were there?

Well, I can’t say that I learned much about the disease while I was there, but, of course, that wasn’t the purpose of the meeting. Our presentations were intended to educate the senior staff and decision makers of the FDA. That being said, what I did learn was the amazing dedication and effort that members of our Parkinson’s community will undertake in order to be heard at a forum. Members with severe difficulties traveled from all parts of our country in order to be able to speak for a few minutes. I was truly honored, and most definitely humbled, to be part of a panel with these dedicated individuals. If you haven’t yet seen the archived presentation of the meeting online, I suggest that you at least watch the members of the first panel speak to the FDA about their symptoms, it was amazing.

What are your hopes for future research in Parkinson’s disease?

We were asked by the FDA to limit our answers to their questions in the context outside of finding an actual cure. In addition, we were mainly directing our responses to the FDA’s role of controlling the approval and distribution of prescription drugs, more so than studying the potential impact of alternative therapies such as exercise, vitamins or other supplements, or the development of new medical devices to assist with symptomatic control (all of which are needed). So I’ll stay within that premise.

I see the need for a three-direction approach for future research. First, we need to continue and expand research into the biological science of Parkinson’s disease, as well as other neurological diseases with similar developmental processes, such as Alzheimer’s and ALS. With a better understanding of the disease cause, pathways, and progression, we will have a much greater chance of finding better treatments and potential cures.

Second, I would like to see research into the development of better symptomatic treatments. These treatments should be effective for multiple symptoms, have fewer disabling side effects, and have extended release and longer term activity. Although today’s treatments are somewhat effective treating motor impairment, they are greatly lacking in effectiveness for many other non-motor symptoms. Many of the drugs have side effects that can be more disabling than the symptoms they treat. In addition, it would be desirable for new treatments have ease of administration, such as oral, sublingual or inhalable as opposed to invasive surgery or device implantation.

Third, and most importantly, we need research to discover interventional treatments that can slow or halt the disease progression, if not totally cure it. This research should target the development of new drugs and vaccines that can intercede along all of the numerous biological pathways as the disease progresses. For example, we would find means to either stop the misfolding of proteins, prevent proteins already misfolded from accumulating in brain cells, or eliminate misfolded proteins which have already accumulated and are leading to cell death. Finally, I would like to see more research in alternative treatments, such as stem cells and human growth factors, in addition to traditional drug development. It’s imperative that the FDA allow our scientists to be as innovative as possible as they attempt to find treatments and cures for the most complex illnesses we have in brain diseases. With new interventional disease modifying drugs, along with improved symptomatic treatments and a proper exercise regimen, most, if not all of us dealing with Parkinson’s disease would be able to live active and productive lives for many years beyond our diagnosis.

For more information, check out the full video of Gary’s panel. And don’t forget to visit the site to connect with Gary and the more than 11,000 other PatientsLikeMe members living with Parkinson’s disease.

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Raise your hand for Eczema Awareness Month

Posted October 23rd, 2015 by

This month on the blog, we’ve already talked about Breast Cancer Awareness Month, Mental Illness Awareness Week and World Mental Health Day. Today, we’re keeping the awareness going strong by highlighting Eczema Awareness Month.

Eczema (Atopic Dermatitis) may affect more than 30 million people in the U.S. So what is eczema, exactly? It’s an itchy, red rash affecting babies, children and adults, and can appear all over the body. Symptoms often become less severe as children grow older, but sometimes, eczema can actually start in adulthood. There’s no cure for the condition, but in many cases it’s manageable.

As part of this year’s effort, the National Eczema Association launched the #ExposingEczema movement, which aims to start breaking through stereotypes and creating a new public awareness about how eczema really affects people’s lives. Here’s what you can do to be a part of #ExposingEczema:

  • Raise your hand
  • Post a picture of you raising your hand on Facebook, Twitter or Instagram with #ExposingEczema
  • Encourage your friends and family to raise their hands
  • Share your eczema story on Facebook, Twitter or Instagram with #ExposingEczema

Remember, eczema isn’t contagious, but awareness is. There are several other ways that you can get involved during – and after – Eczema Awareness Month, and show your support for everyone touched by eczema.

If you’re living with eczema, remember that you’re not alone. There are more than 900 PatientsLikeMe members living with eczema. Connect with them on the site and share your experiences.

#ExposingEczema, together.

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A day in the life of User Experience Designer Flavia Gnecco

Posted October 21st, 2015 by

By now, you’re probably familiar with our “Day in the life” series. But in case you haven’t had a chance to check it out, here’s a quick overview: members of the PatientsLikeMe community share a lot about their health journey and experiences on the site. In turn, we like to share stories from the PatientsLikeMe team every now and then to help everyone get to know us, what we do and why we’re happy to be a part of PatientsLikeMe.

Today, we’d like to introduce you to Flavia Gnecco, a User Experience Designer on our UX and design team. Flavia, a world traveler, joined us last October (happy 1 year anniversary, Flavia!). Read her interview below, and don’t forget to take a look at the other posts in the “Day in the life” series if you haven’t already.

1. How did you first hear about PatientsLikeMe? What brought you to the organization?

I first heard about PatientsLikeMe while I was working at NIBR (Novartis Institute for Biomedical Research) back in 2012. The name came up while brainstorming around how researchers could find out about actual patient experiences. Fast forward a two years later and I came across a job posting for user experience designer at PatientsLikeMe. The name had stuck in my mind. When I learned how PatientsLikeMe was founded, I was sold – it is so authentic and the mission is one that I knew I could stand behind. I got into design specifically so I could work on projects that were having a positive impact on the daily lives of others. I studied Industrial Design in grad school and never thought I’d end up working for a website but when I realized that the process was the same and the outcome was exactly what I was hoping to achieve, it made a lot of sense.

2. Tell us a little about your role as a user experience designer. What kind of projects are you working on right now?

Right now I’m working on a few things. My biggest project so far has been to figure out the first steps towards improving how members can record their experiences, with different conditions. It’ll make things more engaging and the result will be more meaningful to our users. For now that means I’m doing a lot of sketching for how different interactions might work on the site (i.e. if you click a button, what should happen next?).

I collaborate a lot with the engineers who make sure things actually work on the site, and the UX team also works very closely with the health data integrity (HDI) team to design questions and make sure they are accurate but also sound like a human wrote it. Admittedly, it’s a work in progress! While I was in design school I specifically remember saying, “You can apply the design process to anything – you can even design how you ask a question!” Who knew I was predicting my own future? 😉

I’m also working on an ethnography project and get to talk directly to people who are figuring out how to live with a chronic condition. This is really inspiring and I know will influence how I think about the rest of my work – and my life!

3. What’s your favorite part about working at PatientsLikeMe?

Just one?! The people – definitely. There is always an interesting conversation happening and I’m constantly learning something new. I’ve been here a year now but I have yet to be bored. I take that as a good thing. I also really like the fact that PatientsLikeMe is an organization that’s trying to do right in the world. I’ve learned from experience that it’s very important to me. Oh – and bonus – I get to be mentored directly by Kim Goodwin and Robert Reinman.

4. You’ve traveled all over the world and are fluent in 4 languages. What’s your favorite destination outside of the U.S. and why?

Tough question! I’m lucky that I have multiple places that I can call home that are also incredible destinations (Florence, Italy; Lima, Peru; and in the US, Boston; New York; San Francisco) I get to go to those places almost every year.  My two-year-old son has already been to all those locations except NYC…but that’s already in the works.  I don’t know what I’d do if I couldn’t travel!  But honestly, my favorite destinations are all those places I still haven’t been to. I’m definitely a fan of the journey and discovering new places but I’m a quiet adventurer – more on the foods, museums, dramatic landscapes and hikes. High on my list of things to do soon is to buy a round-the-world ticket.

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PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships

Posted October 19th, 2015 by

Cambridge, MA, October 19, 2015—PatientsLikeMe has named 14 members to its patient-only 20152016 Team of Advisors and challenged them to work through an issue that’s central to everyone in the healthcare system: how to redefine patient partnerships. The team will be focused on rethinking what it means for patients to be partners, and on establishing new ways for the healthcare industry to connect with patients to deliver better care.

PatientsLikeMe CEO Martin Coulter said that in an era when patients must be front and center in healthcare discovery and development, the group’s mission is vital to every patient, pharmaceutical company, regulator, payor and provider. “This advisory team includes some of the strongest patient advocates we have ever met. Their experience can empower other patients, and help those serving patients understand what it means to be a good partner. The team’s work will help create a stronger foundation for a more equal and participatory system of care.

More than 1,400 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. The nearly equal mix of men and women are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), bipolar II, cancer, Type 1 diabetes, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lupus, major depressive disorder (MDD), multiple sclerosis, Parkinson’s disease and post traumatic stress (PTS). Members named to the team include: Christel Aprigliano, Craig Braquet, Jeff Demers, Cyrena Gawuga, David Gewirtz, Phyllis Marchand, John Michael, Gus Prieto, Laura Roix, Patti Sanner, Allison Silensky, Angela Stogner, Doug Thornburg and Peggy Zuckerman.

Christel Aprigliano is living with Type 1 diabetes and believes that the key to a good partnership is a focused, data-driven discussion on what matters most to patients. “Patient reported outcomes are crucial to the healthcare conversation. The more information we can share about what life is like for patients every day, the more questions we can ask each other, and the better we can help patients live well with the disease they have.”

The 2015-2016 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times in the coming months. This is the second Team of Advisors the company has formed. Last year, the inaugural group provided feedback to the research team and published a best practices guide that outlines new standards for how researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 350,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


#NotAlone Recap: On PatientsLikeMe, no one is alone…

Posted October 16th, 2015 by

As our #NotAlone campaign wraps up, we hope you’ve been encouraged by the thoughts and personal stories of how other members have felt less alone by learning, connecting and tracking on the site.

We recently had a look at all the member posts in the #NotAlone forum and wanted to share some highlights with you!

 “I feel less alone coming here; it also helps me keep track of things in a way I never could before … It helps to know others truly understand, as someone who hasn’t ‘walked in our shoes’ cannot fully understand.” – member living with MS

“…we all belong to a group where we have many similar experiences, where physical chronic pain seems to be one of the overwhelmingly major characteristics of what we all experience. That bonds us together as nothing else can. It does make me feel like I’m not alone, that none of us are alone as long as we have each other.” – member living with Fibromyalgia

“I have learned more here than I ever imagined possible and I have made friends. Good quality friends that really understand. I have shared with them and they have shared with me … I have learned there is power in numbers.”  – member living with MS

You can always revisit the #NotAlone forum threads to see more of what people said, and keep sharing your own stories whether in the forums or on your profile. Remember, you can help someone just like you see they’re #NotAlone every time you reach out to others and share your own real-world experiences.

#NotAlone, together.

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“I’m happy to say that I’ve made tremendous progress” – An interview with PTS and TBI member Trevor

Posted October 14th, 2015 by

Trevor Martin, a Veteran of the United States Army was deployed to Afghanistan twice from 2009 to 2012 and was later diagnosed with both a mild TBI and PTS. He joined PatientsLikeMe to connect with others living from these conditions. Our friends over at PatientsLikeMe sat down with Trevor to learn more about his life with PTS and TBI. Here’s what we learned….

Some people talk about PTSD ‘triggers.’  Do you know your triggers, or do symptoms happen unexpectedly?

I know some of my triggers, like trash on the side of the road. In Afghanistan they would put IEDs under piles of trash to hide them on the side of the road. So I know if I see that today, my heart starts to race, I get hyper-vigilant, and I start to think something’s about to happen that I need to avoid.

You mentioned that you feel a lot of pressure to be who you were before the war.  How are you different since returning home? 

I used to be the fun guy. All my friends would come to me and we’d go out and go shooting and joke around. It’s hard now because a lot of my friends don’t really understand. They don’t really know what I’ve gone through and what I’ve seen because it’s hard to talk about. The friends that I have told don’t really believe it.

What has it been like connecting with other vets on PatientsLikeMe?  

There are things you’ve done or seen that you will never forget. I don’t want anyone to ever imagine the things I see when I close my eyes at night. I wouldn’t wish that on anyone. It takes a lot for me to come out and talk about it. It’s been easier to connect with people online instead of in person. If I hadn’t found the site, I honestly don’t think I’d be here right now.

I haven’t been on this site for very long but man, I’m glad I found it. Since telling my story in a forum called “PTSD, my story and a cry for help” a couple months ago and reading all of your stories, I’m happy to say that I’ve made tremendous progress within myself. I’ve only had maybe 5 “freak outs” since joining. Whereas I was having 5 a day before. Half of the battle is knowing that you’re not alone in this, we’ve all done and seen different things but in reality, we’re all the same.

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World Mental Health Day 2015: What does dignity mean to YOU?

Posted October 9th, 2015 by

Mental illness affects people in every corner of our global community. Thousands with mental health conditions around the world can face discrimination, stigma, and emotional and physical abuse in mental health facilities. Additionally, many receive poor quality of care due to dilapidated facilities and lack of qualified health professionals.[1]

The theme for this year’s World Mental Health Day, observed annually on October 10th, and sponsored by the World Federation for Mental Health (WFMH), is “Dignity in mental health” and focuses on how dignity can be provided in all aspects of mental health – from patient care to the attitudes of the general public.

The WFMH’s goal when it established World Mental Health Day in 1992 was public education at all levels of society. Today it’s become the largest and most widely promoted education and advocacy program of the WFMH.

How can you take part?  You can read and share their campaign materials. And on social media, they’ve been asking: What does dignity mean to YOU? #WMHDay. You can share your responses on their Facebook and Twitter. And don’t forget to log in to your PatientsLikeMe community to share there as well.

Defining dignity, together.


[1] http://www.who.int/mental_health/world-mental-health-day/2015/en/

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The highs and lows of bipolar disorder

Posted October 7th, 2015 by

Since it’s still Mental Illness Awareness Week, we thought we’d share some facts on bipolar disorders, found in this dynamic infographic. Read our previous post for more information on how to get involved during this year’s awareness week – and all year long. 

Did you know bipolar disorder is a worldwide condition?

  • In Australia there are around 238,957 people with bipolar disorder.
  • In the UK: 723,248 people.
  • Germany: 989,095
  • Canada: 390,094
  • Iran: 810,038
  • India and China, each have 12 – 15 million people who are bipolar

By the numbers…

  • 5.7 million: number of adult Americans affected by bipolar disorder (or 2.6% of population) today
  • 25: average age for beginning of bipolar disorder
  • 50/50: men and women get bipolar equally
  • 3X: But women are 3 times more likely to experience rapid cycling with B.D.
  • 6: Bipolar disorder is 6th leading cause of disability in the world.

For more facts about bipolar disorder, visit the full infographic. And don’t forget to share your experiences with bipolar disorder with the PatientsLikeMe bipolar community.

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Mental Illness Awareness Week: #IAmStigmaFree

Posted October 5th, 2015 by

The National Alliance on Mental Illness (NAMI) spends the first full week of October fighting stigma, offering support, educating the public and advocating for equal care for those living with a mental health condition. While these are a year round focus for them, this week highlights mental illness awareness and 2015 marks its 25th anniversary.

#IAmStigmaFree
This year’s theme revolves around building momentum through the new StigmaFree initiative. Being stigma free means:

  • learning about and educating others on mental illness
  • focusing on connecting with people to see each other as individuals and not a diagnosis; and most importantly
  • taking action on mental health issues and taking the StigmaFree pledge.

Did you know…

  • 1 in every 5 adults – 43.7 million – in America experiences a mental illness.
  • 50% of all lifetime cases of mental illness begin by age 14 and 75% by age 24.
  • Nearly 1 in 25 adultsapproximately 13.6 million –in America live with a serious mental illness.[1]

Mental Illness Awareness Week encourages people to come together to improve the lives of the tens of millions of Americans affected by mental illness.

How can you get involved?
You can learn how to spread awareness this week on the NAMI site. You can involve friends and family in a movie night, book club or awareness day at work or school. Share your story on the You Are Not Alone page. Engage your community in advocating for mental health. Learn the facts. Or join a NAMI Walks team.

National Depression Screening Day
Held on October 8th, during Mental Illness Awareness Week, National Depression Screening Day (NDSD) is comprised of awareness events that include an optional screening component.

National Depression Screening Day began in 1990 as an effort by Screening for Mental Health (SMH) to reach individuals across the nation with important mental health education and connect them with support services. Today, NDSD has expanded to thousands of colleges, community-based organizations, and military installations providing the program to the public each year.

So however you choose to get involved this week, don’t forget to log in to your PatientsLikeMe community to continue sharing your own stories with others.

Let’s fight stigma, together.

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http://www.nami.org/Learn-More/Mental-Health-By-the-Numbers [1]


#HelpingWomenNow: October is breast cancer awareness month

Posted October 1st, 2015 by


October is Breast Cancer Awareness Month, which you’ve probably noticed by the annual surge of pink ribbons – but what does it really mean? The yearly campaign to increase awareness of the disease, hosted by the National Breast Cancer Foundation (NBCF), is about encouraging women to have a plan for early detection with its theme of #HelpingWomenNow.

Since 1 in 8 women will be diagnosed with breast cancer during their lifetime and it is the most common cancer among women worldwide, continued awareness and education efforts are vital in promoting the importance of early detection.

This month you can explore one of the several ways to get educated or get involved:

Early Detection Plan
Create an Early Detection Plan and invite others to do the same through their online site or using the mobile app.

Beyond the Shock

Share Beyond The Shock, the NBCF’s breast cancer educational resource, with friends and family. This free and comprehensive online guide to understanding breast cancer is a resource for women who have been diagnosed with breast cancer, a place for loved ones to gain a better understanding of the disease, and a tool for doctors to share information. Here you can learn through a series of educational videos, ask and answer questions about breast cancer and hear inspirational stories from breast cancer survivors.

Fundraisers

Host a Fundraiser to help provide mammograms for women in need. There are many ways to support the NBCF during Breast Cancer Awareness Month.  You can host an event or an online fundraiser, participate in a physical activity, or be a brand ambassador.

And don’t forget to share your own experiences within the PatientsLikeMe community.

#HelpingWomenNow, together.

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