13 posts from June, 2012

Learning Your Personal Genetics: An Interview with PGen Study Participant PF Anderson

Posted June 29th, 2012 by

Recently, PatientsLikeMe sent a message to our members about an opportunity to participate in the Impact of Personal Genomics (PGen) Study, led by researchers at Harvard and the University of Michigan.  Each of the 1,000 study participants receives personal genomic testing services at a significantly subsidized discount.  Using a series of surveys, the investigators will then look at the risks and benefits of learning this information.  What, for example, will participants do with their discoveries?  Will they make health behavior changes?  Will they tell anyone – and if so, who?

PGen Study Participant PF Anderson

PatientsLikeMe member PF Anderson decided to not only join the study, which has now reached its maximum enrollment, but to also start a blog about her experience.  Find out why and much more in our interview below.

1.  What led you to participate in the PGen study?

The “why,” for me, had three main drivers. First, I’ve been ill for over a decade, and only recently tracked it down to what appears to be celiac disease, but all the blood tests have come back negative for both celiac and gluten-intolerance or wheat allergy. Second, I am both a medical librarian and an emerging technologies librarian. I firmly believe in supporting research both by doing it and also by serving as a subject when appropriate. This project matches my professional interests in several areas, not the least of which has been an emerging awareness of the essential nature of personal genomics and big data to moving research and discovery forward, especially in the areas of rare diseases. Third, curiosity. My family seems to be packed to the gills with various genetic conditions, and I’ve always thought we’d make an interesting study!

2.  Talk about the decision to blog about the study as well.

Why blog? Because, assuming that this IS an important area for research to change the lives of real people, then it is absolutely critical to educate, inform, and openly dialogue about the risks and benefits of personal genomics. Some people I talk with are quite worried about some aspects, while others aren’t even thinking about potential risks! I’m in the middle. I know there are risks, I’m aware that the benefits we hope for in the long term aren’t here yet, but I believe we have to start somewhere to get where I hope we’re going, and someone has to take the risks to hopefully shift the balance.

I hope that the more of us do this, and talk about it, that this will help other patients and individuals think through why they would or would not want to learn this. Also, while I am enormously impressed with the WeConsent.Us website for its information about the risks and benefits of personal genomics and sharing personal data, there is something about telling a story from a real person in their own words that has more impact. Hopefully my own thoughts and story will enrich what WeConsent.Us is doing.

3.  You recently received your genetic results.  What’s that been like?

Frankly, the results so far have been pretty disappointing. There are two branches of the study, one using the testing service Pathway Genomics, and the other using the testing service 23andMe. Each of the two companies runs saliva scans for different conditions, as well as other information. The primary conditions of interest for me were not included in the scan by Pathway Genomics. The results were interesting, but not very relevant. What was most interesting is that, according to the results, for the flock of conditions that run in my family, I am not at risk for ANY of them, including some I am already diagnosed as having. That seems rather surprising, so I am puzzling this over. I suspect that these are actually related to the core condition [celiac disease] that the scan didn’t include.

A little spit is all it takes.  Pictured here is the sample tube that PGen study participants fill with saliva and send in for testing.

I am also a little worried that if I share my test results with my doctors, and the results show that I “don’t have” or am not at risk for these various conditions that run in my family, that the healthcare team might be less vigilant in monitoring these. Because of worrying about the risks of my healthcare team misunderstanding the results and needing the celiac test, I decided to actually spend my own money on getting the other [23andMe] scan. I’m nervous about the money, but I really feel that the information from the one test is incomplete without the other, and the risks of the incomplete information undermine the value of the original test.

4.  At PatientsLikeMe, you’ve been able to chat with other PGen study participants in the forum.  What have you gained from that?

The forum conversations have been fascinating! It is really interesting seeing what sort of questions other people have, their reasons, their assumptions, the information that they bring to the table. Many of the conversations there have triggered new questions for me, and opportunities to learn more.

5.  If you had to pick one key takeaway from participating, what would it be?

We aren’t “there” yet, but if we ever want to get “there,” we need to start somewhere, and that’s here and now.


PatientsLikeMe Adds Three New Executives to Its Leadership Team

Posted June 28th, 2012 by

New Appointments Cap Active Year, Solidify Team for Strategic Growth

PatientsLikeMe, the leading health data-sharing website, announces the appointment of three new executives to its leadership team.  The company, which recently expanded its website to invite patients with any disease, makes this move to focus on expanding the collection and use of real-world disease knowledge to improve patients’ personal experiences and health outcomes.

PatientsLikeMe President and Co-founder Ben Heywood comments,  “Our new teammates—Michael, Sebastiaan and Jeremy—have the operational and leadership experience we need to help guide our strategic growth. I’m excited about the foundation we have built, and about the positive impact we’ll have on patient care, now and for many years to come.”

The following executives round out the PatientsLikeMe leadership team, led by Heywood and his brother, Co-founder and Chairman Jamie Heywood:

  • Michael Evers, Executive Vice President of Marketing
    A consumer and technology marketing expert, Evers joins the company to spearhead business to business marketing and member acquisition. Before joining PatientsLikeMe, Evers was Global Vice President of Marketing for Artfact, the world’s leading live auction software and services provider, and earlier President of BroadMap, a provider of industry-leading geographic data products. Evers’ geospatial industry experience started at TomTom in 2005, where he was the Global Vice President of Marketing and Business Development for the company’s Tele Atlas business unit. Evers has also held senior positions at Motorola and AOL Time Warner.
  • Sebastiaan Foppema, Executive Vice President of Business Operations
    As lead of the newly-formed Business Operations team at PatientsLikeMe, Foppema manages the business development, client services, research and health data integrity team. Most recently, he served as Senior Vice President of Provider Sales and Operations at NaviNet, a healthcare communication network that connects 70% of U.S. physicians with the leading health plans in the country. Prior to NaviNet, Foppema worked for a number of consulting companies in Europe and the U.S. He also formed a healthcare consulting practice in the Boston area, focused on payers and providers.
  • Jeremy Gilbert, Head of Product
    A seasoned business development and innovation professional with expertise navigating the healthcare value chain, Gilbert leads product strategy and development efforts at PatientsLikeMe. Immediately prior to joining the company, Gilbert was an Engagement Manager at McKinsey & Company’s healthcare practice, where he led strategy and execution projects for Fortune 500 clients. He is also a co-founder of four technology startups, and has invented and launched notable products in e-commerce, mobile and discovery bioinformatics. A true technologist, Gilbert has developed software since the age of seven and spent more than 14,000 career hours in software design and construction.

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on Twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]


Take an HIV Test. Take Control.

Posted June 27th, 2012 by

“CDC estimates that 55 percent of adults – and 28 percent of adults with a risk factor for HIV – have not been tested.  Too many people living with HIV are being tested and diagnosed too late to take advantage of effective HIV treatment and prevention options.”
Dr. Kevin A. Fenton, Director,
CDC’s National Center for HIV/AIDS Prevention

Today Is National HIV Testing Day

Today is National HIV Testing Day, now in its 17th year.  Given that 1.2 million Americans are living with HIV and one in five is unaware of his or her infection, the goal of this annual event is to promote regular testing and early diagnosis.

If you haven’t gotten tested recently, here are three quick ways to locate a testing center near you:

Scared to take the test?  It’s perfectly understandable.  But there are good reasons to do it.  If you test negative, you can be certain of your status. If you test positive, you can begin receiving specialized care and treatment to help you stay healthy. You can also look to the 3,000+ patients in PatientsLikeMe’s HIV community for information and support.

More than 30 years after the discovery of AIDS, things are very different.  Thanks to advances in treatment, you can live a long, productive life with HIV, just like basketball legend Magic Johnson, who is now 20 years post-diagnosis and recently narrated an ESPN documentary about his experience entitled “The Announcement.”

So don’t put it off – get tested today.


Quote of the Day: Jamie Heywood

Posted June 25th, 2012 by

PatientsLikeMe Co-Founder and Chairman, Jamie Heywood

“People often think of PatientsLikeMe as a social network, and I think what they miss is the fundamental part of our invention. What we’re really building is the first medical record designed to answer questions directly for patients. Not to do billing, not to do some other component of the healthcare system. To actually answer questions for patients.

Paul Wicks, the Vice President of Innovation at PatientsLikeMe, put down this question: ‘Given my status, what is the best outcome I can hope to achieve, and how can I get there?’  Another way of saying that – because I think that reflects our real mission – is how do we collect all of the meaningful health variables that will allow us to predict the patient’s future and give them the tools to understand how to improve that and all of the elements they care about in their lives?”

– PatientsLikeMe Co-Founder and Chairman, Jamie Heywood


A Peek at the June Newsletter for Members

Posted June 22nd, 2012 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our June 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

Burning. Stabbing. Aching. Throbbing. Dull. Have you used any of these words to describe pain?  Highly subjective to each individual, pain is a sensory experience triggered by the nervous system.  Some of the different types include nerve pain (neuralgia), muscle and joint point and arthritis pain.

Check Out the Pain Symptom Report at PatientsLikeMe

If you’re living with chronic pain, it may feel like no one understands.  But pain is actually one of the top symptoms reported at PatientsLikeMe, affecting more than 40,000 of you and playing a role in so many different conditions, from fibromyalgia to rheumatoid arthritis to lupus. Over half of you rate your pain as “moderate” or “severe.”

How are fellow patients managing this “invisible” symptom?  Check out the pain symptom report as well as the hundreds of treatment evaluations for opioid painkillers such as Tramadol (Ultram) and Hydrocodone; anti-convulsant medications such as Gabapentin (Neurontin) and Pregabalin (Lyrica); and complementary therapies like acupuncture and massage. You can also join in on our forum discussions about pain for tips and advice.

Pain can make you feel alone – but you’re not.  Connect with thousands of others who can relate and share experiences.

Kate, Emma, Liz, Jeanette & Sharry

Kate"" Emma"" Jeanette"" Sharry""

JOIN THE CONVERSATION

Have you poked around the forum recently?  We now have lots of different rooms to meet your needs.  For example, did you know about the Digestive and Intestinal Room, the Muscles, Bones and Joints Room or the Neurological and Brain Room?  Find your favorite room(s) and check out some of these active threads below.

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

WHAT MEN HAVE TO SAY

Last week was Men’s Health Week.  To honor the men in our community, we’ve spotlighted a few thought-provoking quotes by our male members.

Parkinson Pete

“Along comes PD and life changes. Now, I get all anxious about having to be ‘on’ at parties and functions. But, I go to everything! My default answer is now yes instead of no because frankly it’s too much trouble to back out of everything I say yes to. I always enjoy myself and am glad I went. I push myself while I can and it seems to help. It is work, but it is worth it because it not only rewards me, more importantly, it rewards my wife.”

Parkinson’s Pete, PD patient, 61 years old

Tommy Maker

“After a few days spent lazing about, I feel ashamed. I can look at this rationally and consider that in my current circumstances even surviving the day is an achievement but a lingering resentment at my inaction remains present nevertheless. I’m 50 years old, I’ve been unemployed for three months in my life, I’m now facing retirement and wondering whether I will be able to shake off this sense of negative self-perception.”

Tommy Maker, ALS patient, 50 years old


A Day in the Life of PatientsLikeMe Product Manager Maureen Oakes

Posted June 20th, 2012 by

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 NecocheaResearch Assistant Shivani Bhargava, Office Manager Alison Dutton,  Research Scientist Timothy Vaughan and Biz Dev’er Arianne Graham.  Today we’d like to introduce you to Product Manager Maureen Oakes, or as she’s affectionately known around the office, “Mo.”

PatientsLikeMe Product Manager Maureen Oakes

1.  You’re the Product Manager at PatientsLikeMe.  Tell us what that involves.

A little bit of everything! I read in an article that product managers are like “embedded CEOs” because you drive the core decisions to improve and change the product, which in this case is the PatientsLikeMe website. That means different things depending on the circumstances. Sometimes my job is getting all the right people in the room to make a decision, and sometimes it is making a decision myself. In all cases, it involves listening, asking good questions, weighing all the options and following up to make sure what needs to get done actually happens.

Each day I split my time between planning ahead for enhancements we could make to the site in the coming weeks and months and ensuring the things the engineering team is building now are going smoothly.  For example, when we are trying to decide what to work on, we have to ask, “Is A more important than B? What is affected if we choose to work on C instead? Who benefits most from each of those options and how much work is it to accomplish?” It’s my job to tee up those questions so that we are working on the right things at the right time.

The same goes for things we are building now – there are tradeoffs and decisions to be made all day long.

2.  As a longtime employee, what milestones stick out to you?

There are so many! But I think the first would be the launch of the mood conditions community in 2008. I joined PatientsLikeMe in 2007 so it was the first time I participated in building out a community – hearing the research team’s thoughts on disease measures, showing examples to get feedback from patients, and being there to welcome the first members. There was a New York Times Magazine article about PatientsLikeMe around the time we launched, so several thousand people joined that first week. It was amazing to see the community take off so quickly.

In 2010, we started work on another milestone – a project to open up PatientsLikeMe to anyone with any condition. That was a ton of work, but it was great to have the whole company focusing on a very clear goal and working closely together to achieve it. I was especially motivated because my mother was undergoing treatment for lymphoma at the time, and every day I wished we had had PatientsLikeMe members and tools available for her condition. In 2011, she went into remission and PatientsLikeMe opened its doors to anyone with any condition, so that was huge, both personally and professionally.

Maureen's Famous Boston Cream Pie

3.  You’re also the resident baker at PatientsLikeMe.  What treats do you make?

I’m a big fan of celebrating birthdays so my standing offer is to bake whatever a PatientsLikeMe employee requests for his or her birthday each year.

I’ve made all kinds of things – Oreo and whipped cream desserts, carrot cupcakes, brownies, apple cake, triple chocolate cake. But the biggest challenge has definitely been Boston Cream Pie. It is not easy to make, but it’s a huge hit, so now lots of people keep requesting it.

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Want to make a difference in patients’ lives?  Maureen is currently searching for a Senior User Experience (UX) Designer to join her team.  “This may be my biggest project right now!” she says.  “We already have one great designer, but we need help to keep improving the site at a faster pace.”  Learn more about the benefits of working at PatientsLikeMe on our Careers page.


Today’s Photo: Raising Epilepsy Awareness on the National Mall

Posted June 18th, 2012 by

Summer is here, and that means there are disease-related walk/run events happening all around the country!

For inspiration, please meet epilepsy patient Monica (second from right), who led a PatientsLikeMeInMotion-sponsored team at the National Walk for Epilepsy in Washington, DC.  Held on March 31, 2012, the two-mile walk occurred between Madison and Jefferson Drives on DC’s famous National Mall.  “I do a lot of fundraising on my Facebook page, so my friends and family all know I have epilepsy,” says Monica.

PatientsLikeMe Member Monica and Team on DC's National Mall

Congrats to Monica and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your condition. We’re honored to support you every step of the way.  For more PatientsLikeMeInMotion team photos, check out our growing Flickr collection.

Thinking about organizing a team for this summer or fall?  Learn more about the PatientsLikeMeInMotion program today.


Faces Wanted: One Man’s Mission to Drive Awareness of Parkinson’s Disease

Posted June 15th, 2012 by

“I have a hope that this foundation has a short life. We exist to help fund and find a cure. To do that we need to generate and raise awareness of Parkinson’s disease and its impact to the public. Awareness in turn will aid in generation of funding. Funding for a cure and funding for the personal side of the disease. Programs to get people moving, walking, riding, dancing, and exercising.”

– Mike Justak,  Founder of Mike Justak Foundation for Parkinson’s Disease

When PatientsLikeMe member Mike Justak (MJUSAK) realized that Parkinson’s disease (PD) funding was lagging, he decided to take action.  His goal:  to “put a face to Parkinson’s” and highlight the fact that it occurs in patients under the age of 50 as well as older patients.

Mike founded the Mike Justak Foundation for Parkinson’s Disease, and this year he began working on a “Faces of Parkinson’s Video Wall.”  It’s a pastiche of videos submitted by PD patients around the country that he plans to submit to the Parkinson’s Action Network, state governors and US senators.  To add your “face” to the project, all you have to do is submit a short, close-up video stating who you are, where you’re from and what you do.  See Mike’s sample video submission below.

Having being diagnosed with PD in his mid-forties, Mike has also focused on raising awareness of young onset Parkinson’s disease (YOPD).  Check out the growing number of profiles of young onset Parkinson’s patients – from a musician to a teacher to an NBA player – on his foundation’s Younger Faces page.

As Men’s Health Week concludes, we’d like to honor Mike for his efforts as well as thank PatientsLikeMe members tiredoftired and Rick N for sharing their essays about depression and multiple sclerosis (MS) earlier this week.  We salute all of our male members for making their voices heard!


Surviving Multiple Sclerosis (MS)

Posted June 13th, 2012 by

It’s Men’s Health Week, and we’re featuring the perspectives of – you guessed it – men.  Following tiredoftired’s guest post about depression on Monday, we are pleased to present this poignant essay by longtime PatientsLikeMe member and mentor Rick N, who has lived with multiple sclerosis (MS) for 23 years.

I am a 58-year-old man with MS.  It has often been a long, bewildering, and lonely journey, which has taken me to the valleys of sorrow and to the pinnacles of success. MS is not a death sentence, as some would say. Rather, it is an opportunity to inspire and show to the world that an incurable disease can be transformed into a blessing, an enduring promise that life can go on.

MS is a slow and debilitating disease. It creates new challenges daily. Some days I forget that I even have the illness and can do most tasks and chores. The next day may find me with a trembling heart begging for mercy. Sometimes I think that the worst of MS is the unknown. I am currently diagnosed with primary progressive MS (PPMS). I awake with fears and anxieties. What is MS going to give me today? It is the challenge I must face. However, I will tell you how the monster can be defeated!

PatientsLikeMe Member and MS Mentor, Rick N

I do not perceive MS as burden, I see it as an opportunity to overcome. MS had me in a wheelchair for over two years. I was resigned to the fact that the rest of my life would be in this wheelchair. My first thought was simply, “Okay, if this is my life now, I am going to compete in the Paralympics.” So I climbed every hill in my wheelchair as my challenge, until I developed neuritis in both elbows requiring surgery.  That was the end of that goal.

But today, in spite of that setback, I am walking because of a positive attitude and a strong faith in miracles.

My faith in God’s will and guidance for me was ever clear. I made the best of my life as an example to all that “it’s not what happens to you, it’s what you make of it.” Never did I pity myself in that wheelchair. I went out and about under all circumstances. Until one day something of a miracle happened. Whatever it was, I will never know for sure, but I was able to get up and begin to walk. It wasn’t pretty, but I put one step in front of the other and suddenly I was walking again. Then I used my lawn mower to stabilize me. Before long I could walk longer and longer distances. That was almost two years ago and I walk normally today. We all must believe that God’s healing miracles happen everyday. I am living proof.

Attitude is everything, regardless of your afflictions. MS is powerful. So much that it can lead one to believe it is impossible to live a healthy and happy life. Nothing must ever stand in the way of true HOPE. With hope and faith, mountains can be surmounted. However, this does not come easily.

PatientsLikeMe Member and MS Mentor, Rick N

Where does my unshakable attitude come? I often sit quietly, restful and calm. The physical realm becomes in some way a dwelling place for my spirit within. Time well spent in the calmness provides rest from the physical aches and strains. My pain level is always high. It is just the world I live in now. What I have cultivated from MS is the spirit of adventure and conquering the unknown. Acceptance means much.

In 2008, I came across PatientsLikeMe. It was like finding a great pearl in the oceans. Suddenly, the loneliness of MS could be understood by some 150,000 members with the same vague symptoms that I have. To explain what life is like with this disease, there are no words to do justice. But PatientsLikeMe gives me the opportunity to chart all of my symptoms, medications, conditions and treatments. It also offers daily journaling, and most of all, a forum in which I can read and comment with members that are in need of compassion or solutions to their current problems. This is a resource where I can find the answers to all of the confusion that goes along with most chronic illnesses. I have most definitely found it a haven of comfort.

I want to thank all who have read this. I am not a writer nor have I the talent for words. I only wanted to express my feelings about MS and the values that the disease has brought me. Should there be a cure today, I would much rather opt for the continuance of this illness. Reward and treasures are mine that I could obtain nowhere else.


Mike Wallace, Depression and Me

Posted June 11th, 2012 by

In honor of Men’s Health Week, we are pleased to present a guest post by PatientsLikeMe member tiredoftired, a young man who has been living with major depressive disorder since 2007.  Don’t miss this moving essay about how Mike Wallace’s passing earlier this year impacted and inspired him.

As I was driving to therapy on an April afternoon, I heard a news report that Mike Wallace, an original host of the television show 60 Minutes, had passed away.  I was intrigued when the short segment highlighted Wallace’s accomplishments in his battle with depression.  I was only somewhat familiar with the show, but it was obvious from the report that he had a decorated career as a journalist and his professional accomplishments could have easily taken the full slot.  Having struggled with depression myself, I felt compelled to investigate his life further.

Mike and Mary Wallace.  Photo Courtesy of CBS News.

For those of you who are unfamiliar with his work as I was, Wallace was a pioneer of the newsmagazine format, which shaped journalistic television.  He was a pit bull of a correspondent; with his aggressively confrontational approach, he posed direct questions that others were too afraid to ask, often leaving the subject shaken.  Wallace interviewed some of the most eminent, and even fearsome, people and did not hold back on his interrogation-like technique.

But Wallace said that his greatest accomplishment in life was that he survived.  Wallace endured several bouts of severe depression throughout his life, the first of which left him in such emptiness and despair that he attempted suicide as a means of escape.  He used his personal experiences with depression to share ideas that would give other sufferers advice and hope.  Reading about his life made me feel the same comfort he provided to others when he was alive, and I have become encouraged by lessons he transmitted.  Here are the top four:

  • There is no shame in depression: Wallace constantly repeated that depression does not signify an emotional weakness.  The pain, inability to cope and despair are unfathomable to those who have not experienced depression.  It is not a sadness that is surmountable by sheer willpower.  Aside from reassuring sufferers that their pain and disabilities were justified, it comforted them by seeing someone well-respected using his high-profile position to dissolve social stigma.
  • There is no shame in asking for help: The stigma can prevent people from seeking help and make them embarrassed that, unlike others, they are unable to push through sadness themselves.  Wallace said that the single most important thing you can do is to go and talk to someone.  He stressed that it is impossible for one to handle alone, and he encouraged people to seek therapy and take medication, as well as emphasizing the importance of social support from family and friends.
  • You are not alone: During depressive episodes, Wallace often talked to two close friends that also experienced depression.  By talking to those who could truly empathize, he felt comforted and validated.  Not only was he reassured that what he was feeling was normal, they were able to give him valuable insight and ideas.
  • There is a light at the end of the tunnel: Wallace’s friends also gave him hope.  He saw that they had been through the darkness of depression and survived.  And he passed along that message to others. As bad as it seems now, he told people, look at how he emerged from that same prison and went on to live a happy, productive life.

Mike Wallace has inspired me to perpetuate these messages and give others the same comfort and hope he gave me.  Depression is a real medical illness and pursuing treatment is nothing to be embarrassed about. With the help of mental health professionals and a strong support system, we have the ability to fight through the darkness.  By doing that, we can do more than just survive – we can build productive and meaningful lives.

Learn more about Mike Wallace’s struggle with depression in this candid CBS interview from 2006. Also, if you’re living with depression yourself, we invite you to join PatientsLikeMe’s depression community and connect with more than 11,000 others like you.


Why Should I Participate in a Clinical Trial?

Posted June 8th, 2012 by

“Before me, there were hundreds and thousands of other people with Parkinson’s who participated in clinical trials that gave me the ability to have the medications that I take today. If people today do not participate in clinical trials, there will be no cure. There will be no new medications.” – Parkinson’s patient Jean

Last year, PatientsLikeMe unveiled our Clinical Trials search tool, which helps you find upcoming studies that might be right for you.  We also introduced a matching feature that notifies you on your profile when you meet the criteria for a new study.  That means when your condition, gender, age and location are all a match.

Anyone (Members or Otherwise) Can Use the Clinical Trials Search Tool at PatientsLikeMe

But if you’re unfamiliar with the clinical trial process, the idea of participating in a study may be a bit daunting.  That’s why the National Institutes of Health (NIH) recently launched a new microsite called NIH Clinical Research Trials and You.  Here you’ll find a clear overview of how clinical trials work as well as a number of personal stories from both study volunteers as well as researchers.

Below are two volunteers’ stories to give you a sense of the different reasons people have for participating in research.

Jenny (Type 1 Diabetes)

Jean (Parkinson’s Disease)

Have you participated in a clinical trial?  Share your experiences in the comments section.


Spotlighted Blogger: Meet Psoriasis Patient Joni of “Just a Girl with Spots”

Posted June 6th, 2012 by

Psoriasis Blogger Joni of "Just a Girl with Spots"

Welcome to the latest installment of our “Spotlighted Blogger” series.  This spring we’ve been focusing on psoriasis patient bloggers, starting with Lissa in March and Alisha B. and Jessica in April.

Today, we’d like to introduce you to Joni (girlwithspots), a PatientsLikeMe member who writes a blog called “Just a Girl with Spots.”  How has she found acceptance with this chronic skin condition (which can cause itching, rashes and plaques) as well as the courage to wear a bathing suit?  Check out our interview below.

1.  Tell us about being diagnosed with psoriasis.

My diagnosis at age 15 was frustrating and dramatic. I was already super awkward – tall and lanky with a mouth full of braces – so to me it was the end of the world. The spots seemed to come on overnight and they took control of my skin. I felt self conscious and ugly all of the time. Even the word psoriasis felt ugly to me. I wasn’t comfortable talking about my skin condition to even the closest of friends. My friends and family knew that I had psoriasis, but not any of the emotions and stresses that I felt as a result of it.

At the time of my diagnosis, I didn’t understand why there was no magic pill that I could take and the spots would go away. Though told over and over, I also didn’t fully understand that my lifestyle and choices would help to play a large role in controlling my outbreaks. I played lacrosse and danced on the kickline, so I wouldn’t allow it to stop me from doing the things that I loved. But there were always the extra steps I had to take to cover it up to feel a sense of comfort – always two pairs of dance tights, leggings and long sleeves in the heat, extra make-up, etc. So even though I did the things I wanted, there was always something that held me back from feeling as carefree as a teenage girl should be.

2.  You’ve blogged about finding acceptance with psoriasis.  What are your top tips, and how does blogging play a role?

Not talking about my condition stuck with me until very recently, and it feels amazing to have finally let go of that internal struggle. Growing up with psoriasis was a challenge that I’m glad I had, it’s allowed me to find myself in a way that may not have happened otherwise. Blogging about living with psoriasis has been extremely therapeutic for me and is the reason why my skin is currently under control. It’s allowed me to get to know my skin on a deeper level and pinpoint what is and what isn’t working for me. My skin is always top of mind, but I always felt stressed and emotional about it, which was actually making it worse. Through a daily journal and blogging, my treatment plan is focused and I feel more relaxed than I ever have about my skin.

A Glimpse of Joni's Blog, "Just a Girl with Spots"

Psoriasis treatment is so much about trial and error; there are things that work wonders for others and would do absolutely nothing for me. It’s helped me to organize my thoughts and my own personal research to discover the right formula for me. For me, it’s eating fresh and organic foods that are higher anti-inflammatory, it’s exercising 3-4 days a week, using tea tree oil and heavy moisturizing creams and taking several supplements that I’ve found to be beneficial (daily multi-vitamin, omega-3 fish oil, milk thistle, turmeric, biotin, vitamin B-12, acidophilus). But I always find my biggest relief through the sun, so maybe it’s time insurance starts picking up the tab for my tropical vacations!

3.  I see you vacationed in Florida over Memorial Day weekend.  How did you cope with being in a bathing suit and “having spots”?

I had really wanted to find a new bathing suit for the summer that was white with red polka dots, so I could call it my new camouflage. I decided that instead of running from my spots, I needed to own them in my own way! But unfortunately I didn’t find one in time before I left for Florida! But even knowing and deciding that, I still had anxiety about being in a bathing suit. The past few sunny weekends had pretty much cleared up most of my upper body. But the spots on my legs have always been stubborn, so prior to the trip I had been treating them with a steroid ointment. That only left me with red spots and dark bruises, so not much better!

I decided the day before I left to stop stressing about it. I was going to Florida to celebrate the birthday of a close friend and I wanted to focus on enjoying the weekend, not hiding my spots. I posted about it a few days before I left and got several emails from friends with words of only love and support. I know that attitude plays a large role, but I also believe it’s necessary to only surround yourself with people who love you for you. And that doesn’t just go for people with psoriasis, that’s for everyone.

4.  What’s the most helpful thing you’ve learned at PatientsLikeMe?

PatientsLikeMe has shown me that I’m not alone in my struggles and feelings about living with psoriasis. Having the ability to connect with people who understand exactly what I’m going through has reinforced the reasons that I started my blog. People with psoriasis are always there to provide guidance, treatment recommendations, and most importantly, their love and support. If I can help at least one person with my blog, then I’ve done what I set out to accomplish.

Answering frequent questions about my own condition lets me track my progress and allows me to take a hard look at how my skin is reacting from day to day, week to week, month to month. PatientsLikeMe really understands how different conditions can affect your day to day health, but most importantly how it affects your mental well-being. You understand how important a healthy mentality is and the large role it plays in battling any disease or condition.


Living with Psoriasis: PatientsLikeMe Member Lissa Featured on Patient Power

Posted June 4th, 2012 by

“I don’t really know too many people around here with psoriasis.   It was hard to relate with somebody.  My family, my friends, my husband, they’re great support, but they can only see what I’m going through, they can’t go through it the way I do.  It’s really important to be able to connect with people who truly understand what you’re going through.”

Psoriasis Patient Lissa

In March, we introduced you to Lissa, a psoriasis patient who had recently started blogging about life with this chronic skin condition.  At that time, she had begun UVB photo therapy treatment for her psoriasis.

Now, several months later, you can see how Lissa is doing after completing her 51st UVB photo therapy session – and how PatientsLikeMe continues to play a role in her wellbeing – in a Skype video interview with our partner Patient Power, a site dedicated to connecting you with the experts on your condition.  That means doctors and patients.

Lissa Conger: Managing Psoriasis and Harnessing the Power of Patient Communities from Patient Power® on Vimeo.

Powered by Patient Power

Check out Lissa’s engaging interview with Patient Power founder Andrew Shorr, a leukemia survivor, above.  And stay tuned for more Patient Power videos featuring PatientsLikeMe members – including patients with multiple sclerosis (MS) and cancer.