It’s been a busy couple of weeks at PatientsLikeMe.  Here are a few media highlights showcasing all the exciting things that are going on, from new partnerships with Aetna and Boehringer to the major grant we were awarded by the Robert Wood Johnson Foundation to TED2013 Fellow Paul Wicks’ presentation at TED2013 last week.

PatientsLikeMe Is Building a Self-Learning Healthcare System
(Forbes)

Social Network Could Revolutionize Disease Treatment
(Wired)

PatientsLikeMe Leads Crowdsourcing for Patient Outcomes
(Fierce Biotech IT)

What the NHS Can Learn from Innovative Health Practices Abroad
(The Guardian)

Boehringer Partners with PatientsLikeMe on Rare Disease Community
(PMLive)

Networking Medicine: Patients Take a More Active Role in Science
(The Scientist)

PatientsLikeMe:  Crowdsourcing Healthcare
(AllVoices)

For more PatientsLikeMe media coverage, visit our Press page.

What is idiopathic pulmonary fibrosis (IPF)? How many people does it affect? Do we know what the cause is? Can it be treated? If you don’t know the answers, you’re not alone. IPF is considered a rare disease by the National Institutes of Health and much of the research surrounding it is not definitive.

So what do we know? IPF is a degenerative condition with no known cause that gradually scars a person’s lung tissue. As more and more tissue scars, the lungs slowly lose their ability to transfer oxygen to vital organs. This can lead to shortness of breath and dry coughing. As the condition progresses, everyday activities become exhausting – just climbing a flight of stairs can be a challenge. It usually affects people between the ages of 50 and 70 years old. More than 100,000 people in the US are diagnosed every year and nearly 40,000 will pass away. The only known cure is a lung transplant.

If you’re living with IPF, find others just like you in our growing community of almost 200 IPF patients. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile and in the IPF forum. If you haven’t read about our collaboration with Boehringer Ingelheim to create this customized IPF experience on PatientsLikeMe, check it out here.

Today, February 28th, is Rare Disease Day, a worldwide event showing solidarity with rare disease patients and their families around the globe.  The theme for this year is “Raise and Join Your Hands,” and everyone is being asked to participate, whether you’re an individual, an office with 10 people or a public gathering with 1,000 people.

Here at PatientsLikeMe, we are taking part by raising our hands and sharing our group photo in solidarity with the campaign as well as all of our members living with rare diseases, which affect 1 in 10 people worldwide.  You are encouraged to submit your own photo here.

Rare diseases are a special passion for PatientsLikeMe, as our company was started due to our founders’ experience with a rare disease called ALS (Lou Gehrig’s disease).  Since then, we’ve partnered with the Global Genes Project to form the RARE Open Registry Project to connect patients fighting rare diseases and help them share and learn.

“It’s terrifying to think you’re alone and manage your rare illness with a doctor who might not have ever seen another patient like you,” says PatientsLikeMe Co-Founder Jamie Heywood. “We will change that.”  Most recently, we launched the world’s first open registry for patients with alkaptonuria (AKU), the first genetic disease discovered.

When you are diagnosed with a life-changing illness, your doctor may prepare you for how the disease will affect your physical functions.  But as our members point out, patients also need to be prepared for the changes in physical appearance they may experience.  For example, how do you deal with hair loss, facial swelling, weight gain, blotchy skin or other unexpected changes?  Or get comfortable with the use of new equipment such as leg braces, walkers or wheelchairs that may attract attention?  Most importantly, what can you do to still feel beautiful?

Here are some suggestions from members of our PatientsLikeMe Forum, where patients with different conditions come together to discuss universal issues:

• Using attractive scarves or hats to cover thinning hair or bald spots
• Experimenting with different cosmetics to see what works best
• Treating yourself to a spa manicure and pedicure as a pick-me-up
• Trying out different explanations for your new brace/walker/wheelchair when asked to see what feels right and what produces the most acceptable responses
• Soaking in a scented Epsom salt bath to ease pain and relax
• Consulting with a hair stylist about better styles for thinning hair
• Using gentle, non-drying facial cleansers and lotions
• Switching to an electric razor to improve ease and safety
• Donating your hair to Locks of Love to put a feel-good spin on it

Have you discovered other tricks to help you deal with a changing appearance?  Join this ongoing discussion in our forum or share your experiences in the comments section.

Last week, we announced that we are creating the first open, global registry for alkaptonuria (AKU), in collaboration with the AKU Society.  You may not have heard of this extremely rare disease – which causes a severe, early-onset form of osteoarthritis – but it plays an important role in the history of genetic diseases.  In fact, AKU, which is estimated to affect 1 in 250,000 to 500,000 people, was the very first genetic disease identified in the scientific record.  Strangely, though, the scientific community failed to recognize this landmark discovery until much later.

In 1902, Sir Archibald Garrod, a British physician interested in childhood diseases, published a paper describing the hereditary nature of AKU in The Lancet.  After observing the frequent occurrence of AKU in siblings, Garrod came to believe that the condition was congenital and possibly hereditary.  Using chemical studies, he set out to disprove the existing theory that AKU was infectious – and succeeded. By 1908-1909, he’d expanded his radical notion of lifelong hereditary disease to other rare disorders: albinism, cystinuria and pentosuria.   In lectures and publications at the time, he became the first person to describe a human condition that followed Mendelian inheritance patterns, the first to propose the concept of recessive inheritance, and the first to mention the importance of consanguinity, or the genetic similarity of blood relatives who marry and reproduce.

As a result of these significant discoveries, Garrod (who passed away in 1936) is now considered the first human geneticist, as well as the father of “inborn errors of metabolism,” an expression he coined. Yet Garrod’s pioneering work was not appreciated during his lifetime.   Part of this may be due to the fact that the term “genetics” itself – as well as the principles behind it – had not yet been formulated when he was alive.  He was far ahead of his time.  According to a 2008 article published in the Journal of Inherited Metabolic Disorders, Garrod “can rightly be deemed one of the most profound intellectuals of the 20th century, whose bequests to science and medicine continue to increase in value.”

Despite over 100 years of study since Garrod’s 1902 publication, there is still no cure for AKU.  Through our new registry – which will bring together AKU patients from around the world, patients who may have never met another AKU patient like themselves – we hope to help both patients and researchers answer fundamental questions and accelerate research focused on this often painfully debilitating disease.   What we will discover, together?  Stay tuned.

Online Patient Network to Connect Patients With Rare Disease,
Create Valuable Data for Research

CAMBRIDGE, Mass. — January 9, 2013 — PatientsLikeMe and the AKU Society are working together to create the first open, global registry for patients with alkaptonuria (AKU), one of the world’s rarest diseases and the first genetic disease discovered. Nicknamed “black bone disease,” AKU leads to a condition that causes the bones and cartilage to become black and brittle. Through PatientsLikeMe.com, patients with AKU can now track their disease progression, connect with others who have the disease, and contribute health data to the registry’s real-time research platform.

AKU Society Chairman Nick Sireau says rare diseases affect millions of people worldwide, but questions about them are so costly for nonprofits to investigate that they remain largely unanswered. “More than 100 years after its discovery, we still don’t know exactly how many people have AKU, or what they are doing and experiencing. We’re excited to partner with PatientsLikeMe to help patients connect with each other and help researchers answer some of the most fundamental questions about rare diseases.”

PatientsLikeMe works with nonprofits to establish open registries for both rare and common diseases. With the AKU Society, the company will regularly gather data about AKU patients’ symptoms and daily lives to establish the most up-to-date source for new medical evidence about the disease.

PatientsLikeMe Co-Founder and Chairman Jamie Heywood says, “This open registry will give anyone—hospitals, pharmacies, providers, nonprofits and patients themselves—a real world view of where and how the disease affects people. This information is vital to deepen our collective understanding of AKU and to drive smarter action, more effective treatments and better patient outcomes.”

AKU has no cure and is estimated to affect one person in every 250,000-500,000. For more information visit http://www.patientslikeme.com/join/aku.

About The AKU Society
The AKU Society was founded in 2003 in Liverpool by AKU sufferer Bob Gregory and his doctor, Dr. Lakshminarayan Ranganath of the Royal Liverpool and Broadgreen University Hospitals. It was the first AKU charity in the world. It is patient-led and includes patients, relatives, medical experts and friends and carers among its supporters. The society aims to locate AKU sufferers to offer them help and support, to raise awareness of AKU and to support research into its treatment. Its vision is to find a cure for AKU within the next decade. The AKU Society has established an influential multidisciplinary network, including representatives from numerous universities and hospitals, pharmaceutical companies and national AKU patient groups in Europe, the Middle East, Asia and North America. The society has also funded two research programs into AKU and the first AKU information center. Visit us at www.akusociety.org or follow us on Twitter or Facebook.

About PatientsLikeMe
PatientsLikeMe is a patient network that helps improve lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. PatientsLikeMe has become a trusted source for real-world disease information and a clinically robust resource that has published more than 25 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Last year, over 170,00 patients learned from each other’s shared experiences every day on PatientsLikeMe. In 2013, we promise to continue putting the patient first. We’ll provide better, more effective ways for sharing real-world health experiences that help you, other patients like you, and organizations that focus on your conditions.

You’ll hear us talk more than ever this year about living better, together. What does that mean to you? As we kick off 2013, just know this…what inspires us most to live better, together is YOU.

From everyone at PatientsLikeMe, Happy New Year!

Can you be friends with someone you’ve never met in person?

The members of our online health community – now 170,000+ patients strong – think so.  In fact, many of them say they depend on other members for support and encouragement, and for the all-important reminder that they are not alone.

As evidence, here is a touching poem written by a newer PatientsLikeMe member.  Although he wishes to remain anonymous, he says that he wrote the poem to “uplift people who feel like no one understands them.”

Dedicated to Internet Friends

It’s strange to have a friend

that you have never hugged,

lightly touched their arm,

or looked into their eyes.

But you have touched their soul

felt their heart

been embraced by their warmth of being.

A friend unseen is not a friend untouched.

The eyes of the soul will gaze,

the heart will embrace

the image will stand tall

but only in a dream.

Want to connect with those who can truly relate?  No matter what health condition you have – from multiple sclerosis to fibromyalgia to Parkinson’s disease – find others like you at PatientsLikeMe.

For many newly diagnosed patients, accepting help can be as difficult as accepting the diagnosis itself.  According to some of the members of our Parkinson’s disease community, here are a few signs that you may be struggling with the idea of becoming someone who might need help.

• Have you found yourself feeling resentful when family, friends or strangers try to assist with something?
• Have you resisted using a complimentary wheelchair (e.g., at the airport or on cruise ship) out of embarrassment?
• Have you worried that becoming someone who receives help is going to change your lifelong identity?

If you answered “yes” to any of these questions, you are far from alone.  Many PatientsLikeMe members report that learning to accept help gracefully is one of the most challenging aspects of chronic illness.  And it’s not just allowing the help itself, per se, but seeing yourself in a new light, as one member puts it.  It’s not unusual to take great pride in being a superman or superwoman, the type of handy, resourceful person who does it all and is always helping others in the family or community.  This can be part of your self-image, as well as a source of self-esteem.

So what do you do when you are suddenly the person being helped instead of the helper?  It requires a psychological shift, according to our members, that involves letting go of ego and viewing the care and assistance you are receiving as a gift, not an insult.  It also means communicating frequently and lovingly about the issue, so as to address “the elephant in the room.”  If you can manage the task yourself, speak up and say so politely, advises one patient.  Otherwise, practice saying “thank you” and “I love you” with gratitude, encourages another member.  Ultimately, as our members state over and over, the best tools for coming to terms with the realities of your new life are a positive attitude, humor and support from others like you.

Can you relate to this common hurdle?  Join this insightful discussion in our forum or share your thoughts in the comments section.

Is there a caregiver in your family?  For example, someone who looks out for an elderly parent or grandparent – or who cares for a child or spouse with a debilitating illness?

November is National Family Caregivers Month, a time for recognizing the important role of family caregivers in our society as well as the challenges they face on a daily basis.  Currently more than 65 million Americans (or approximately 29% of the US population) are serving in a caregiver role in any given year, averaging 20 hours per week.  Approximately 66% are women. The value of services these caregivers provide for “free” when caring for older adults is estimated to be $375 billion per year.

Yet what many people may not think about is the economic and health impact on the family caregiver.  Financially, caregiving families have median incomes that are 15% lower than non-caregiving families, and women caregivers are 2.5 times more likely to live in poverty than non-caregivers.  In terms of health and well-being, approximately 40 to 70% of caregivers report clinically significant symptoms of depression, according to one study, while 55% say they skip doctor appointments for themselves.  Read other eye-opening caregiver statistics here.

PatientsLikeMe strives to support and involve caregivers with our “CareTeam” concept, which was developed to include everyone who participates in the care of our patient members.  That could be a spouse/partner, parent, child, doctor, therapist, home health worker, sibling, relative or friend.  Patients can invite caregivers to join PatientsLikeMe, and once they are members, send them a CareTeam invite to link together their profiles.  That way, both the patient and caregiver can stay abreast of how the other is doing physically, emotionally and socially.

Currently, there are more than 7,000 caregivers registered with PatientsLikeMe, many of whom are active users of our forums, who chart their own symptoms and treatments and who are seeking information, guidance and support directly from patients or other caregivers.  Browse their profiles – even if they have no specific health issues, caregivers can monitor their well-being with tools like our InstantMe and Quality of Life surveys – and find out what their life is like today.

It may seem counterintuitive, but according to some of our members, there are actually some good things that can come out of being diagnosed with a serious illness.  In the spirit of Thanksgiving – a time when many people are reminded of all the things they have to be grateful for – we thought we would share some of our members’ uplifting sentiments.

From our Fibromyalgia Community, some of the unexpected benefits include:

• Getting to spend more time with children or grandchildren
• Taking advantage of “good days” with a little extra gusto
• Appreciating what you have…and knowing it could be worse
• Refocusing on new hobbies like gardening and meditation

From our Multiple Sclerosis (MS) Community, some of the unexpected benefits include:

• Letting go of the pressurized feeling that you have to do it all
• A deeper understanding of how many people face major challenges
• Discovering new artistic talents, such as painting or needle work
• Slowing down the pace of life and prioritizing sleep – without guilt

From our Epilepsy Community, some of the unexpected benefits include:

• Learning to never judge a person by only what you see
• Becoming more patient and not taking anything for granted
• Filtering out fair-weather friends and uncaring partners
• Having extra motivation to live the healthiest lifestyle possible

What about you?  Have you noticed some positive takeaways from your illness?  Share them in our comments section in honor of Thanksgiving.  And, from everyone at PatientsLikeMe, we wish you and your loved ones a wonderful holiday!

Getting the right diagnosis can take many years, or in the case of PatientsLikeMe patient Pampe, many decades.  After experiencing her first Lyme disease symptom in 1973, it was not until 2012 that she finally received a diagnosis that explained her many symptoms.  Discover what hindered the process and what’s she learned along the way in our interview with this highly active member, who has contributed more than 12,000 posts to our forum since joining PatientsLikeMe in 2010.

1.  You had a very long journey to discovering your Lyme disease. Where were some of the obstacles?

The main obstacle to an appropriate diagnosis of Lyme disease for me was the lack of knowledge in the traditional Western Medical System. Had my general practitioner (GP) known about the testing for Lyme, I might have been diagnosed 10-12 years earlier. Many people go from doctor to doctor and undergo a horrific array of tests and medications before they find out it is Lyme disease.

2.  We have a new Lyme Disease Forum at PatientsLikeMe. What is that important to you?

After my diagnosis and two other members of the Fibromyalgia Forum discovering they too had Lyme, I think I was pretty vocal in expressing the need for a Lyme Disease Forum. There are several clinical studies indicating that many people with autoimmune disorders, fibromyalgia, chronic fatigue syndrome, multiple sclerosis (MS), ALS and Parkinson’s disease actually have underlying Lyme disease or co-infections.

3.  You have a three-star profile as well as more than 5,600 helpful marks for your forum activity, which means you are one of the most helpful members around! What do you get out of using PatientsLikeMe?

I have always considered it an honor to help people both professionally and as a volunteer. Most people come to PatientsLikeMe in a state of shock, sadness and loneliness. They need support and information, and PatientsLikeMe can provide that in many ways. I have tried to help with support and information. What I get out of it is the absolute joy of seeing someone rise above his/her diagnosis and find new ways of being. It has been my great joy to see 4-5 new people from other forums find a Lyme disease diagnosis after reading some of the information I posted.

4.  Your profile reveals that you have an interest in alternative medicine. Where does that stem from?

During my working life, I was a nurse and psychotherapist. I was lucky to train in areas where alternative, holistic practices were available. I have seen them work and work well in many instances. I personally use alternative care for most of my health needs. There is no doubt that what we put in our bodies (mentally, physically, emotionally or spiritually) affects our health. It seems reasonable to me that we then must look at all those things and change what isn’t working.

Here are some of the media items that grabbed our attention recently.

Four Things I Learned from Living with a Chronic Illness
Wise advice from a teenager who had to give up competitive gymnastics and find a new perspective on life after being diagnosed with a disease that causes chronic pain.

Access to Doctors’ Notes Aids Patients’ Treatment
A new study finds that patients better understand their condition and feel more in control when they can read their doctors’ notes (something you’re legally entitled to access).

Why We Need Ecological Medicine
Do we need exposure to a diversity of bacteria and germs for optimal immune health?  A thought-provoking essay about the “germ theory,” “hygiene hypothesis” and more.

Coming Next:  Using an App as Prescribed
A New York Times piece about whether healthcare apps – now regulated by the FDA – could reduce costs and change the way we monitor health.

Help with ALS via Twitter
An article about our partner ALS Untangled and how they are applying scientific rigor to the investigation of alternative therapies in ALS, having reviewed 45 to date.

Mining the Internet for Speedier Alerts on Drugs
The Wall Street Journal examines the results of a study showing that Internet search algorithms can detect adverse events for certain drugs ahead of FDA warnings.

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 PatientsLikeMe employees from different departments.  Today we’d like to introduce you to Adam Darowski, a father of three who joined the technology team as a web developer exactly three years ago.  Find out why he had a crush on the company long before he came to work here and more in our interview.

1.  What led you to join PatientsLikeMe in 2009?

I had been a big fan of PatientsLikeMe since late 2006 when I originally met Co-Founders Ben Heywood and Jeff Cole. Over time, it became more and more clear to me that my next position would be with PatientsLikeMe. First the company hired Kate Brigham (who I had known for quite a while), then I met people like Cris Necochea and Rich Thornett. I knew it was a special place with special people.

What ultimately led me here in 2009 was the opportunity to do some things that were very important to me. I want to make PatientsLikeMe an incredible resource not just for patients living chronic conditions, but also for parent caregivers of children with developmental and chromosomal disorders. We’ve made some progress on that front but still have a lot of work to do.

2.  Give us a slice of life as a web developer.  What are you working on currently?

We just finished Wow Week, which is pretty much my favorite thing in the world. [Occurring every six weeks, Wow Week is a week of unstructured time in which the PatientsLikeMe technology team can work on and present their own ideas.]

I worked on some concepts for what PatientsLikeMe could look like if it was focused exclusively on parent caregivers. So, this involved some user research (not a ton, since it was only a concept and I only had a week), user interface design, and a lot of visual design. Since I also love to get in the code, I then worked with Michael Berkowitz to start building it out some of the features. My main focus there was on the home page, building a design that would work well whether you looked at it on a phone or a 24-inch monitor.

During more typical weeks, my time is spent building and improving site features. I’m a “front end” guy, which means I don’t really do any hardcore software engineering. Rather, I build the part that you actually see and interact with. I also like to chip in on the design side of things, whether it is on new features or just adapting an existing design for new requirements or different scenarios.

3.  What would you tell someone who’s considering joining the technology team?

I would tell them that this is a very passionate, bright, motivated and diverse team, and I’m honored to be a part of it. PatientsLikeMe isn’t a place to go if you have a big ego. We work together, we collaborate, we give and receive constructive criticism, we strive to make each other better, and we strive to give our members the best user experience possible. If you want a genuine, honest-to-goodness chance to build something that has a chance to change the world, this is where you want to be.

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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 to hire a Senior Ruby on Rails / Web Application Developer, Business Development Manager, Graphic Designer and more at the moment.