The Value of Openness: The PatientsLikeMe Blog

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features employees from different departments.  So far, we’ve interviewed User Experience Engineer Cris Necochea, Research Assistant Shivani Bhargava, Office Manager Alison Dutton and Research Scientist Timothy Vaughan. Today we hear from Arianne Graham, a Harvard MBA graduate who joined the business development team in 2010.  What current project is she most excited about?  And how is working at PatientsLikeMe different than her previous healthcare jobs?  Find out that and more in our interview.

1.  What’s it like to be part of the business development team?

When spending time with friends and family or even meeting new people, I’m always excited to answer that small talk question: “What do you do?” I happen to think I have the best job ever.

As part of the business development team here at PatientsLikeMe, my colleagues and I work with everyone who cares about patients (including providers, researchers, pharmaceutical companies, insurance companies, pharmacies, and many more!). We look at how the real-world data shared by our members can transform their businesses for the benefit of patients everywhere.

Sounds like fun, right? Most of the time, it really is. This is also hard work, though. Sometimes I feel as though the rest of the world is not yet ready to hear the patient’s voice. The truth of each patient does not always fit perfectly inside the constraints of a randomized clinical trial or a research protocol. But it’s here to stay, and we are actively finding ways to layer this emerging data source on top of the world in which we live. That’s reason enough for me to get up every day and come to work with my very talented team.

2.  What kind of projects are you working on at the moment?

I am often the first contact for individuals and organizations that contact us via partners@patientslikeme.com or support@patientslikeme.com. We receive multiple messages a day with ideas regarding how PatientsLikeMe might work with another company or integrate a new technology. It’s up to me to prioritize which opportunities to pursue now given the market landscape, and which to save for later.

One of our most basic and popular services is clinical trial recruiting. On any given day, I have to do something related to one of these campaigns. The members that use PatientsLikeMe are probably more likely than most to be motivated to try investigative therapies, to access better healthcare, or to simply participate in research. Finding the right patients for a study can be so difficult, but thanks to the demographic and health data patients report to us, we can easily let patients know about clinical trials for which they may be eligible.

The project I am most excited about, however, is a clinical trial of PatientsLikeMe as an intervention. We have partnered jointly with a pharmaceutical company and an integrated payor/health system to empirically test the effects of the website on patient activation and health literacy. Additionally, this is one of the first projects to really integrate PatientsLikeMe into the clinical encounter between doctor and patient. We haven’t publicly announced the details yet, so stay tuned. I can’t wait to tell you more!

3.  How have your parents – who are both doctors – influenced your career?

As the child of two pediatricians, I know I was exposed to the healthcare industry and certainly aware of it more early in life than most people. I noticed and appreciated that they treat their patients as people, not diseases. They remain committed to serving their patients, to helping them get better so they can lead productive lives. For them, the medical field is not so much a job as a calling. I know I felt led to serve, too. Even when I abandoned my pre-med plans in college, I knew that healthcare is where my heart is. I just found another way to pursue it.

I cannot imagine working outside of this industry because it appeals to me on so many levels: I can serve others, and I’ll never get bored. Healthcare is what we used to call in consulting a “big, hairy, ugly.” It is messy and complicated, it affects us all, and there are no clear answers. All of that makes this sector intellectually stimulating and extremely rewarding.

4.  You’ve worked for pharmaceutical companies, a hospital and a consulting firm.  How is working at PatientsLikeMe different?

I think all of my previous work experience has prepared me well because I lean heavily on what I know to be true in healthcare in my current role. While I knew exactly what to expect in pharma, hospitals, and in consulting, PatientsLikeMe has proven to be a bit like the Wild Wild West. We are creating a world that never existed before: where patients take charge, and their real experiences are being integrated into the healthcare system around them. There are absolutely no rules yet. It’s exciting and uncomfortable; inspiring and frustrating. And you know what? I wouldn’t have it any other way.

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Interested in making a difference in patients’ lives?  Check out our Careers page to see our current job openings.  Headquartered in Cambridge, Massachusetts, PatientsLikeMe is looking for a Marketing Coordinator, Community Moderator, Research Client Manager and more at the moment.

Ladies, we know your lives get busy.  So why not pull out your calendar or smartphone right now and see if you’re due for a visit to your health care providers?  You’ll be doing your part for National Women’s Checkup Day (observed today, Monday, May 14th), an annual event that’s part of National Women’s Health Week.

Checkup Day encourages women to get regular checkups that are vital to the early detection of heart disease, diabetes, cancer, mental illnesses, sexually transmitted infections and other conditions.  The reason is simple.  Women often serve as the caregivers for their partners, children and parents. As a result, their own well-being can be secondary at times.  The theme of National Women’s Health Week 2012 – “It’s Your Time” – speaks to the fact that women need to prioritize their own health as well.

Not sure what preventative screenings are recommended for you?  Check out this handy chart organized by age group.  Then take the Checkup Day pledge along with women around the country to get at least one recommended screening during May. If you’re concerned about cost, you should know that all recommended preventative screenings – such as mammograms, colon cancer screenings, Pap screenings and well-woman visits – are now covered by your insurance plan with no out-of-pocket costs.

But scheduling an appointment may just be the first step.  If you’re looking to get healthy in 2012, why not do it with the help of a community?  The 2012 WOMAN Challenge offers an online platform for tracking your nutrition goals and daily activity.  The challenge is to follow through with planned nutrition changes and be active 30 minutes a day, at least five days a week, for six out of eight weeks.  Register here to get started.

If you’re a woman living with a health condition, you can also find a community of women right here at PatientsLikeMe.  We have 70,995 female members who are sharing how they are managing more than 1,000 different conditions, including fibromyalgia, endometriosis, menopause, infertility and postpartum depression.  Take control of your condition with the help of women just like you today.

Sponsored by the National Fibromyalgia & Chronic Pain Association (NFMCPA), Fibromyalgia Awareness Day (Saturday, May 12th) is an annual event dedicated to raising awareness of this complex chronic pain disorder.   Fibromyalgia (FM) affects an estimated 10 million people in the US, 75-90 percent of whom are women—but it can also occur in men and children.

The 2012 theme for Fibromyalgia Awareness Day is “Make Fibromyalgia Visible.”  There are several ways you can help do this:

• Join a Walk to CURE FM event (Logan, UT, or Philadelphia, PA).
• Sign the “Pledge to Care” as a caregiver, friend or provider.
• Sponsor a “Light of Hope” candle in honor of a loved one with FM.
• Add your photo to the NFMCPA’s Faces of Courage Wall.
• Sign this Change.org petition started by a PatientsLikeMe member.

You can also take a moment to brush up on this often-misunderstood condition, which is characterized by pain or aching in the muscles (myalgia) and multiple points of tenderness (trigger points).  With more than 23,000 patients, the fibromyalgia community at PatientsLikeMe is a great place to gain knowledge.  Some of the most commonly reported symptoms in our community include muscle and joint pain, brain fog, pain in the lower back and balance problems.

What are our members doing to cope?  Commonly reported treatments include selective serotonin and norepinephrine reuptake inhibitors (SSNRIs) such as Duloxetine (Cymbalta) and Venlafaxine (Effexor); analgesic and anti-convulsant medications such as Pregabalin (Lyrica) and Gabapentin (Neurontin); and muscle relaxants such as Cyclobenzaprine (Flexeril) and Carisoprodol (Soma).  Click on each treatment name to see how patients evaluate the effectiveness, side effects, cost and more.

For more insight into living with the “constant, widespread pain” of fibromyalgia, check out this video made by a recently diagnosed patient. And if you’re a PatientsLikeMe member, don’t miss the forum tag Life with Fibromyalgia.

Welcome to the latest installment of our “Spotlighted Blogger” series.  This spring we are focusing on psoriasis patient bloggers, starting with Lissa back in March and Alisha B. a few weeks ago.

Today, we’d like to introduce you to Jessica Gough, a 19-year-old from the UK who recently started a blog called Jessica and Psoriasis.  What kind of reaction has she gotten?  And what tips does she have for those who feel isolated due to this chronic skin condition, which can cause itching, rashes and plaques (scaly patches)?  Check out our interview below.

1.  How are you feeling about being a newly minted “psoriasis blogger”?

The best word to describe how I feel about being a psoriasis blogger is relieved. I chose relieved because there is so much I have experienced throughout my psoriasis journey – both positives and negatives – that I wanted to talk about that even my closest friends and family were unaware of.  By writing my blog I have been able to explain all of my experiences without having to face the challenges of approaching the subject in general conversation. I have also found that by using my blog to share my journey with psoriasis it has enabled me to talk and share information with other psoriasis sufferers, which I have found warming and comforting.  Since starting my blog the support and feedback I have received has been overwhelming.

2.  Tell us how psoriasis affects your daily decisions – from shaving to clothing.

I believe with psoriasis you choose how much you let it affect your daily life and decisions. For me I would say my psoriasis majorly affects my decisions based upon the way I present myself for the day. If I wake up and skin has flared up or has worsened, I find I have to choose the right kind of clothes. I tend to wear leggings most of the time as the material doesn’t rub my skin and they are cool in comparison to jeans for example. Also if I want to wear a jumper I make sure I have a top protecting my skin underneath so my skin doesn’t become itchy.

Dependant upon the look of my skin also affects decisions such as whether I can wear makeup or whether I can shave my legs in the shower. If my skin is red and flaky I try as much as possible not to touch it with products that could make it worse. This includes shaving my legs, although if I am going out to a nightclub or party, though, I will plan in advance in order to make sure I can shave my legs, and I will use moisturizers to make my face suitable for makeup. Other than clothes and personal care, I try to make sure my psoriasis does not affect my decisions.  However, sometimes with a flare-up my mood can be worsened, and I tend to find things harder to cope with generally.

3.  What is your personal recipe for getting through a psoriasis flare-up?

My personal recipe probably has to be not to give up. When you have a flare-up, it is a perfect opportunity to put tips and techniques to the test, ask other people what they would recommend or go back to your consultant and ask for help. I do usually have a routine of making sure I have a bath every night to relax and then covering myself in moisturizers and creams before bed to help me sleep better. I also wear socks and gloves depending how bad my skin is to stop me itching and making my skin bleed. I find the more I itch, the more distressed I become, which obviously worsens the flare-up. So I try to stop it from becoming a cycle.

4.  Any advice for someone who feels alone or isolated due to psoriasis?

I think feeling alone is a common feeling amongst psoriasis sufferers, and I certainly felt alone before writing my blog. My advice would be to talk to other people, find out about chat boards, blogs and charities relating to psoriasis, and use these resources to share ideas, stories and experiences with others.  You may be surprised at some of the feedback you receive. I used to feel that even though I had support from many people around me, no one ever actually understood what I was really feeling and what I was going through. Talking to other people gave me the freedom to say how I really felt and not be embarrassed. I personally believe that talking with others about living with my psoriasis has been part of my therapy.

Did you know that arthritis is the most common cause of disability in the US?  Or that this disease – which affects some 50 million Americans – has more than 100 different types?

May is Arthritis Awareness Month, a nationwide event sponsored by the Arthritis Foundation (AF) to raise awareness and funds.  All across the country, Arthritis Walks will be held this month as part of the Let’s Move Together campaign, which encourages people everywhere to get moving to prevent or treat arthritis.  That’s because walking is an easy, effective way to keep your joints mobile, lose weight and boost overall health.

Another way you can get involved is by honoring a loved one who is living with (or lived with) arthritis through Hope Through Heroes.  Celebrate your father, mother or another important person in your life by sharing their inspirational story.  Then email your tribute or memorial page to other friends and family, who can post their own testimonials and/or make donation in that person’s name.

Given that arthritis strikes 1 in 5 adults, you likely know someone with the condition.  But you may not know how extensive it is.  A common myth is that arthritis only occurs in old age.  Yet two-thirds of those with arthritis are under the age of 65, and 300,000 of them are children with juvenile arthritis (JA).  (JA itself has several subtypes, including polyarticular onset JA and systemic onset JA.)

At PatientsLikeMe, our rheumatoid arthritis (RA) and osteoarthritis (OA) communities confirm that these two common forms of arthritis can affect people of all ages.  For our 2,737 patients with RA, the most common age bracket is age 40-49.  And amongst our 1,900 patients with OA, the 50-59 age bracket is the largest.  Another key takeaway is that women are disproportionately affected (92% women vs. 8% men for our RA community, and 90% women vs. 10% men for our OA community).

Have you been diagnosed with a form of arthritis?  Got questions for others like you?  Chat with the 19,000+ members of our Muscles, Bones & Joints Room today.

How do you define a disruptive hero?  Here is Hacking Work’s three-pronged filter:

• Disruptive because they are proving conventional wisdom wrong.
• Heroes because they are changing the rules of the game, for the better.
• Great because they helped to change us all for the better.

Given these demanding criteria, we are pleased to announce that Hacking Work has recognized PatientsLikeMe Co-Founder and Chairman Jamie Heywood for disrupting the accepted rules of the medical world.  How did his upbringing encourage him to ask questions?  Why does he believe it’s possible to both challenge and respect the healthcare system at the same time?

Find out that and much more in this thought-provoking interview:

Earlier this month, we told you about a new study showing that ALS patients reporting their health status over the Internet (using a rating scale known as the ALSFRS-R) is just as reliable as a trained nurse rating the patient’s score.   Now, we’d like to share our interview with lead study author Dr. Thomas Meyer, a neurologist at Charité University Hospital in Berlin, Germany.  What role did PatientsLikeMe play in this research?  And what are the study’s implications for the future of clinical trials?  Find out that and more in our interview with Dr. Meyer below.

1.  When did you become interested in patient-reported outcomes?

In 2005, we first used tablet PCs in our outpatient department to capture patient-reported outcomes (PROs). To us neurologists, PROs play a crucial role. Many neurological conditions can be captured by means of PROs only – I am thinking of pain in neuropathies, spasticity in multiple sclerosis (MS), the subjective perception of movement ability in Parkinson’s syndrome and dyspnoea (breathing difficulty) in neuromuscular conditions, including ALS. Given this fact, we neurologists have always listened to our patients a little more carefully so that we can do a good job. Therefore, the systematic capturing of PROs is a natural process to us, and we are most happy to be able to support any advancement and positive development thereof.

2.  Your study showed remarkable agreement between the two ALSFRS-R reporting methods.  Were you surprised that they were so similar?

You are absolutely correct. Correlation here looks like a textbook example of medical statistics. We were indeed very surprised to find that the data were so unequivocal.  Notwithstanding, our previous experience with the offline electronic capturing of ALSFRS-R had taught us that the data captured in a personal interview are very close to those captured in computer-based self-assessments.

Then we took the next step and progressed from offline to online assessment. Other work groups had already shown good correlation between the face-to-face capturing of the score on the one hand, and data capturing over the phone on the other. That was very useful upfront information for us. Insofar, the success of our study didn’t come as a complete surprise to us.

3.  How did Dr. Paul Wicks, PatientsLikeMe’s Director of Research & Development, contribute to this research project?

Our great interest in the issue of PROs in ALS goes back a long time. Nevertheless, we were very much aware of the fact that PatientsLikeMe is by far the most experienced organization with regard to PROs worldwide and also the one that identifies with this topic most. So, a small group of four of us flew from Berlin to Boston to introduce our clinical trial to PatientsLikeMe and to learn from their experience. Once we had concluded the study, we flew to Boston once again to see Paul and to prepare the paper. We profited immensely from Paul’s input, and he gave the manuscript a superordinate perspective.

So it is for a good reason that he is listed as co-author of this publication. Overall, this scientific research project was a collaboration between the Charité University Hospital and PatientsLikeMe. I believe it is also an important, gratifying and affirming experience for PatientsLikeMe to see that in terms of methodology the online capturing of PROs is at least equal to an interview conducted face-to-face. I can even imagine situations where the online mode of capturing PROs is actually better than a personal interview, especially where rather complicated and very private issues are addressed. This is just one of the many points we discussed vividly with Paul.

4.  Do you believe online patient reporting will become an acceptable practice for clinical trials?  What are the ramifications if it does?

I can very well imagine that the online capturing of PROs will one day become an integral part of clinical trials. It is quite an obvious thing; however, owing to regulatory requirements, it will be quite some time before it will actually be possible to implement this. The bottom line is that clinical trials will have to be conducted for each score demonstrating equivalence between paper-based and web-based capturing. Not all of the scores have actually been evaluated for online capturing. Another critical point surely is Internet access.

Having said that, it certainly also depends on the patient group and the actual medical condition under examination. I suppose that from a medical-ethical point of view it is problematic to exclude patients from a trial simply because they are unable to realize an online completion of the score. In this regard, I believe the first step to be taken must be to demonstrate equivalence between online and offline capturing of the score. Then one could give patients the option of using online assessment in the context of participating in a clinical trial and see what they would prefer to do.

The benefits would be immense. This method could highly enhance the quality of the data, the efficiency of data capturing and, not least of all, it would help reduce the costs of a clinical trial. I believe that online assessment will be a matter of course in the future, but not immediately.

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our April edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.

MONTHLY MUSINGS

What’s with sharing, anyways?

We’ve said it before, and we’ll say it again – we believe in the power of openness. By sharing your experiences, healthcare can be changed for the better.  You can monitor your health status and make changes accordingly; you can find out you’re not alone; and both patients and organizations can do research based on your real-world experiences.

Every single patient on our site contributes to this change.  When you add conditions, treatments and symptoms, you’re entering data that enables others to learn from you.  The way we see it, when everyone shares, everyone benefits.  To see how, check out these reports and dig deeper into the individual stories and data.

Treatment Reports
Things you can learn: How is this treatment working for other patients?  What side effects have they reported?  What are the most common dosages?

Symptom Reports
Things you can learn: How many other patients have experienced this symptom?  What are they taking to treat or manage it?  How severe is it for them?

Condition Reports
Things you can learn: Who else has this disease?  When did they experience their first symptom?  What are some of the most common treatments?

Thanks for everything that you’ve shared – and continue to share – at PatientsLikeMe.  Here’s to all that will be learned in 2012 as a result!

- Kate, Emma, Liz, Jeanette & Sharry

JOIN THE CONVERSATION

What’s happening in the forum?  Check out some of these active threads below.  Then jump in with your own questions and answers.

• Do you have a family history of MS? (MS Room)
• Scared of electroconvulsive therapy (ECT) (Mental Health Room)
• A roadmap for survival, peace and non-suffering (ALS Room)
• What are your results with muscle relaxants? (FM/CFS/ME Room)
• How to adjust to not working and lower income (Immune Room)

Need help with something on the site?  Visit the PatientsLikeMe Site Help Room for answers from veteran members.

WHAT’S YOUR STORY?

Everyone has one.  Tell yours in our new open text box (shown below).  Anyone who follows you will then see your story in their feed.  Stories are also important part of your health journal.  Have you used the new journal feature? Adding a story (and photo!) about any of your conditions is a great way to get started.

Parkinson’s Awareness Month isn’t over yet!  This month-long effort is capped off by the Parkinson’s Unity Walk, which takes place Saturday, April 28th, in New York City’s Central Park.

The largest grassroots awareness event for Parkinson’s disease (PD), the Unity Walk is anticipated to attract more than 10,000 participants.  If you’ve never attended something of that size, it’s quite a lot of people.  Beyond the sheer scope of the event, there’s another noteworthy fact:  100% of all donations go towards research supported by the seven major US Parkinson’s foundations.*  In 2011, that came to more than $1.5 million!

Now in its 18th year, the Unity Walk is an opportunity for solidarity amongst the different PD organizations.  Admirably, these groups have shown there’s no need to compete for funds when you can come together as one.  “This event truly unifies the whole Parkinson’s community behind a common mission—supporting the best, cutting-edge research,” says Joyce Oberdorf, President and CEO of the National Parkinson Foundation.  “It is like no other.”

What’s new for 2012?  First, there’s a new 1.4 mile walk route in Central Park – slightly longer than 2011 but shorter than in previous years.  (It is wheelchair accessible.)  There will be free coffee served this year, and there will also be four food trucks on hand.  Another fun feature is the Team Photo Booth.  Get a printed copy of your photo right away and then download a digital copy later from the vendor website.  Learn about other new aspects here.

Over the years, PatientsLikeMe has sponsored a number of Unity Walk teams through our PatientsLikeMeInMotion program, which provides bright blue T-shirts, a monetary donation and more.  We’ve also attended the Unity Walk and interviewed some of the PatientsLikeMe members present.  Check out the short one-minute video below featuring four members of Team PatientsLikeMe at the 2010 Unity Walk.  (Find other Unity Walk interviews on our YouTube channel.)

*All Unity Walk donations are split evenly among these seven US organizations:  American Parkinson Disease Association, The Michael J. Fox Foundation for Parkinson’s Research, National Parkinson Foundation, Parkinson’s Action Network, The Parkinson Alliance, Parkinson’s Disease Foundation and The Parkinson’s Institute and Clinical Center.

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features employees from different departments.  So far, we’ve interviewed User Experience Engineer Cris Necochea, Research Assistant Shivani Bhargava and Office Manager Alison Dutton.  Today we hear from Research Scientist Timothy Vaughan, who earned his PhD in physics before deciding to focus his simulation and modeling skills on medical questions.

1.  What research projects are you working on at the moment?

I am working on a few different things. My primary focus recently has been on modeling multiple sclerosis (MS). As just about anyone with the disease can tell you, MS is a highly complex, highly variable illness. To even get a good description of the experience of a patient is a challenge. As one of the “mathy” people at PatientsLikeMe, my job is to try to make the description as systematic and quantitative as possible, because mathematical relationships are often the best tools in trying to solve the underlying puzzle of what the body is doing.

So, for example, I have recently been looking at some of the ways that symptoms and the Multiple Sclerosis Rating Scale (MSRS) are interrelated, which may help us understand how functioning and symptoms go together. And, although I am focusing on MS, I am constantly struck by how certain concepts seem to apply across conditions, so I am hopeful that we can learn things that will ultimately help all our patients.

2.  Tell us how computer simulation and modeling help you do your job.

It is fair to say that my job would not even exist without computer simulation and modeling! Partly because clinical trials and other scientific methodologies have become so expensive and time-consuming, scientists in healthcare have to really become creative in trying to learn more about patients and their conditions. Simulations and modeling are becoming essential tools in the era of “big data” that PatientsLikeMe is at the forefront of.

3.  What do you see ahead in terms of PatientsLikeMe’s research potential?

I have to quote the Danish physicist Niels Bohr: “Prediction is very difficult, especially about the future.” I think almost everyone in healthcare right now believes that patient-reported outcomes are going to be of greater and greater influence in the future…but no one is 100% certain how!

In many ways, research is forced to be in a somewhat opportunistic position, because one is never quite sure where the most promising frontiers are, where one is most likely to discover something interesting and useful for patients. But our research potential really stems from our patients. Their willingness to share how they are doing, in so many ways, gives us potential to not just work on what appears to be interesting now, but to quickly respond to new directions that might arise in the future.

4.  What are the three best things about working at PatientsLikeMe?

For me personally, the best thing about PatientsLikeMe is that every morning I wake up knowing that everything I work on is not just scientifically “interesting” (although I like that!), but also really has the potential to help patients’ lives. So, even though the work can be frustrating at times, it is always worthwhile.

The second awesome thing, and it’s almost a cliché to say around is here, is that the people here are so passionate and smart and great to work (and play!) with. Seeing other people working hard and caring deeply about what they do is a great motivation.  The third awesome thing: Alison makes sure there is a constant supply of York Peppermint Patties in the kitchen.

Is it getting hot in here?

Earlier this month, corporate research firm Lead411 announced its 2012 “Hottest Companies in Boston” awards, which recognize the fastest growing technology companies in the Boston area.  The award selection process started with over 1,776 companies and was narrowed down to the top 62.  We were one of them!

Headquartered in Cambridge, Massachusetts, PatientsLikeMe is honored to have been recognized, and we congratulate all of our fellow award recipients.  Check out the press release to see the full list of honorees and learn about the award criteria.  And in case you’re wondering, yes, we’ve had to turn up the A/C since becoming a “hot company.”

Welcome to the latest installment of our “Spotlighted Blogger” series.  So far, we’ve interviewed patient bloggers living with gastroparesis, type I diabetes, bipolar I disorder, Parkinson’s disease and ALS, and today we introduce Alisha B., who felt alone in her struggles with psoriasis until “coming out” on her blog, Being Me in My Own Skin.

Alisha is currently participating in the WEGO Health Activists Challenge, which encourages health bloggers to write 30 posts in 30 days during the month of April.  To make it easy, WEGO sends out a daily theme to tackle.  Alisha has risen to the occasion and produced inspired posts such as “Dear 16-Year-Old Me” and “I Do This for One Reason.”  How has blogging changed her?  Find out that and more in our interview below.

1.  Tell us about growing up with psoriasis – the physical and emotional impact.

Growing up with psoriasis was not an easy battle.  I was not only dealing with the regular stuff like puberty and body image, but throwing psoriasis in the mix made it a lot tougher. I’ll be honest, confidence was not something I had very much of as a child. Although, I was not a depressed child. I was considered the class clown or goofy one among my friends, but deep down inside I was hurting.

I just wanted to be “normal” and in my eyes that was a life without psoriasis. I may have been this confident chick to somebody from the outside looking in, but I stopped myself from a lot due to my condition. Now that I look back on my teenage years everything I did was virtually shaped around my psoriasis. The decisions I made, the activities I participated in, the events I went to, even the clothes I wore.

2.  What’s it been like “going public” about your psoriasis on your blog?

I started my blog in June 2011 after going to the National Psoriasis Foundation (NPF) conference. I remember sitting in a workshop they had about using social media to advocate for your condition. I had seen other psoriasis bloggers, and I remember saying to myself, “I can do that.” On the way home from the conference, ideas were flowing to my mind on different posts I could do, and it was a really great feeling.

Going public with my condition through my blog has been liberating! I wish I would have done this a long time ago. A lot of times I hid, uncertain of how people would accept my condition. But today, the more people I discuss my disease with, the more I realize that the things I was telling myself mentally were only because of my own insecurities. People are a lot more understanding than I could have ever imagined.

My outreach has also helped me to connect with other people dealing with psoriasis, and I no longer feel alone like I did just one year ago.

3.  What are the most helpful things you’ve learned from other psoriasis patients?

I met a young lady named Kasi at the NPF conference. Her psoriasis condition was equivalent to mine. Her skin was very visibly broken out. She was so confident with the way she walked and the clothes she wore, it really inspired me to stop hiding. Kasi as well as others at the conference really made me feel good and encouraged me. I’ve had this type of encouragement from family and friends, but nothing is like the inspiration that you receive from people who are actually living with this disease. Other psoriasis “conquerors” encourage me to not be ashamed and to embrace my condition.

4.  Tell us about the WEGO Health Activists Challenge and why you’re participating.

The WEGO Health Activists Challenge was suggested to me by the NPF. Doing the challenge is exciting because there are new topics to discuss everyday and I get to connect with other activists. I decided to participate in the challenge to bring more attention to psoriasis. A lot of people are silent about it out of fear of ridicule, and I was once one of these people. The more people who know about this disease, the faster the stigma will end.

Have you seen the awareness ribbon with the puzzle pattern?  It’s the symbol for autism awareness, with the puzzle pieces representing the mystery and complexity of autism spectrum disorders (ASD).  The different colors and shapes also highlight the diversity of families living with this condition, which occurs in 1 in 110 births in the US according to the Autism Society.

April is Autism Awareness Month, so it’s a good time to boost your knowledge of this increasingly prevalent developmental disability (with an alarming 10-17% annual growth).  Over a lifetime, ASD care costs $3.2 million per person.  But the cost of lifelong care can be reduced by two-thirds with early diagnosis and intervention.  That’s why it’s so important for parents to get their child evaluated if they suspect autism.

What should you look for?  Signs of autism typically appear before the age of the three and can include language delays (or the lack of spoken language), repetitive behaviors (e.g. arm-flapping or repeating language), poor eye contact, lack of interest in peer interaction, lack of spontaneous play and a persistent fixation on the parts of objects.

Even though boys are four times more likely to have ASD than girls, PatientsLikeMe’s community of 600 autism patients (some with accounts maintained by caregivers) has a higher number of females, interestingly.  What are they doing to cope?  One of the most commonly reported treatments is occupational therapy (OT), which helps ASD patients overcome daily living challenges. Our OT treatment evaluations share valuable advice and experiences, such as this tip:  “OT through the school is helpful for less appointment making along with being in a familiar environment.”

To learn more about autism, and how you can become an advocate, check out this powerful video made by the father of an autistic daughter.

For an ALS patient, an eye gaze system – a type of augmentative speech device that translates eye movements into words – can make it possible to communicate with loved ones when speech is impaired or lost.  But as animation studio owner Mick Ebeling found out, not every patient with advanced ALS has one.  The problem?  They’re big and expensive, and in many cases, US health insurers won’t cover them.

This discovery came about when Ebeling learned about a legendary Los Angeles graffiti artist named Tony “TEMPT ONE” Quan (whose “tag” is shown above), who was diagnosed with ALS at age 34.  Quan’s family told him that they were only able to communicate with their completely paralyzed son through spelling out words.  Shocked, Ebeling decided he had to help.  “There are certain inalienable rights that people are entitled to, and I think being able to express yourself is one of them,” says Ebeling, who now gives TED talks (see video below) about this unexpected calling.

First, Ebeling convinced Quan’s insurer to cover an eye gaze system so that the talented artist could “speak” again.  But he didn’t stop there.  He wanted Quan to not only be able to communicate but to draw, so that he could continue his career.  So Ebeling founded the Not Impossible Foundation and enlisted the help of programmers and open source activists in creating a low-cost, open-access writing and drawing device for paralyzed patients.  Despite having no background in ocular recognition, they pulled it off.

Named one of the top 50 inventions of 2010 by Time, the brilliantly simple EyeWriter device can be made for less than $50.  It involves a pair of sunglasses, IR LED lights, copper wire and a PC webcam.  There’s no technology component that can’t be found at Home Depot or Radio Shack, and that’s the point.  With free open-source software that can be downloaded online, the DIY EyeWriter is a device almost anyone can build and use.  (Download the instructions here.)

“We’ve created a device that has absolutely no limitations,” says Ebeling.  “There’s no insurance company that can say ‘no.’ There’s no hospital that can say ‘no.’ Anybody who’s paralyzed now has access to draw or communicate using only their eyes.”  Case in point:  in April 2009, Quan was able to create a completely new 10-story mural using only his eyes.  Two years later, his post-ALS artwork appeared alongside famous street artists Banksy and Shepard Fairey in a MOCA exhibit.

This amazing story of inspiration and ingenuity has now been turned into a documentary entitled Getting Up: The TEMPT ONE Story.  Directed by Ebeling’s wife Caskey, the film won the Audience Award for Best Feature Documentary at the 2012 Slamdance Film Festival.  Check out the trailer below and read what this husband-wife team think are the universal lessons from their EyeWriter journey.