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.

Valentine’s Day is all about showing your love for your significant other.  But what if it were also about showing your love for perfect strangers?

February 14th is National Donor Day, a day of awareness about how registering to be an organ donor can give someone a second chance at life.  Does your driver’s license currently indicate that you are a donor?  If not, and you’d like your organs (as well as potentially your tissues, marrow, platelets and blood) to help someone else after you are no longer here, sign up to be a donor today.  In the time it takes you to register, someone with a life-threatening condition will be added to the waitlist.

Wondering if your registration will really make a difference?  Here are a few statistics that help underscore the need for more donors:

• 117,001 people are currently waiting for an organ transplant
• 18 people will die each day while waiting for a new organ
• 1 organ donor can save up to eight lives total

In particular, there is a need for more minority donors.  While organs are not matched according to race/ethnicity, there is a greater likelihood that compatible blood types and tissue markers – the critical elements of the matching process – will be found among members of the same ethnicity.  Thus, a greater diversity of donors could potentially increase access to transplantation, which is essentially the only treatment for end-stage organ failure (e.g. kidney failure, heart failure, liver failure).

Are you awaiting an organ transplant – or the recipient of one?  Join PatientsLikeMe to connect with others like you.  We have thousands of transplant patients among our members, including those with (or still awaiting) a heart transplant, kidney transplant, liver transplant, lung transplant and pancreas transplant. What’s it like to go through organ transplantation? Read our in-depth Patient Voice report on “Life After a Transplant” as well as our insightful interviews with liver transplant recipient Amy Tippins and kidney transplant recipient Michael Burke.

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 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!

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.

On October 9th, Bloomberg TV aired a four-and-a-half minute “Innovators” segment profiling PatientsLikeMe’s journey as a company.  Filmed partially in our office in Cambridge, Massachusetts, the piece features PatientsLikeMe Co-Founder and Chairman Jamie Heywood as well as Ed Sikov, a PatientsLikeMe member with Parkinson’s disease.  Our thanks go to Bloomberg’s Nicole Lapin for her in-depth coverage of our evolution into a data-sharing platform that, as she puts it, “functions more like a clinical trial.”

Watch the Bloomberg TV profile below:

Visit our Press page for other recent PatientsLikeMe media highlights.

Many patients with life-changing conditions report feelings of grief and guilt about no longer being able to do many of the things they did in the past.  As a recent discussion in our forum revealed, however, patients are finding ways to reset their perspective and boost their self-esteem by focusing on what they are still able to give to others, despite the challenges of their illness.

Here are some of the small and large contributions our members have made, helping them to feel good about themselves:

• Going to the hospice to sit and talk with the residents
• Sending handwritten letters via snail mail to loved ones
• Participating in educational events about the role of service dogs
• Getting good friends together for a gathering to reconnect
• Volunteering in a food bank to appreciate having food to eat
• Calling an isolated grandparent or friend regularly on the phone
• Allowing the cat from down the road to come inside and snuggle
• Fostering or adopting medically fragile children in the system

Have you found strength – or a renewed sense of purpose – by doing what you can to help others?  Share your experiences in the comments section.  Also, you may want to check out two books recommended by our members for inspiration:  Strong at the Broken Places, about five different patients with chronic illnesses including ALS and Crohn’s disease, and 29 Gifts, written by a multiple sclerosis (MS) patient whose South African healer gave her a prescription of helping others for an entire month.

Did you know that both hepatitis B and hepatitis C can be transmitted through blood-to-blood contact – but hepatitis B is commonly transmitted through unprotected sex as well?  Also, there is a vaccine available for only one of these forms of hepatitis.  Do you know which one it is? (Answer: hepatitis B)

Because these “silent” infections may not cause symptoms for years, hepatitis B and C are the focus of World Hepatitis Day, which takes place tomorrow, July 28th, and is sponsored by the World Health Organization (WHO) and the World Hepatitis Alliance (WHA). (There is another form of this viral infection called hepatitis A, which is typically transmitted through contaminated food or drinking water.)

The reasons for greater awareness are stark:  the WHO estimates that two billion people have been infected with the hepatitis B virus and approximately 240 million people are living with chronic liver infections. Approximately 600,000 people will die every year from the consequences of hepatitis B.  In addition, there are around 150 million people chronically infected with hepatitis C worldwide, and more than 350,000 die each year from related liver diseases, according to the WHO.

Despite these alarming figures, hepatitis remains poorly understood, and the majority of those infected are unaware.  Should their infections become chronic, people living with either hepatitis B or C are at risk for serious liver complications, including liver cirrhosis and liver cancer.  In some cases, a liver transplant may be required.

You can learn firsthand about these conditions and their complications from our hepatitis patients at PatientsLikeMe.  As of today, 88 patients report hepatitis B, while 299 patients report hepatitis C.  In addition, 522 patients have undergone a liver transplant to replace a diseased liver.

If you haven’t been tested for hepatitis – or you want to know more about the hepatitis B vaccination – talk to your doctor at your next visit.  If you’re living with chronic hepatitis, we invite you to join our supportive community today.

A native of Glasgow, Scotland, Graham Steel is a longtime “Guest Researcher Member” of PatientsLikeMe.  Following the death of his brother Richard at the age of 33 from a rare condition known as variant Creutzfeldt-Jakob Disease (vCJD), Graham became involved in patient advocacy work, and most recently, in lobbying for open access to published scientific research.  Find out how this active blogger and Tweeter developed a passion for data sharing in our interview below.

1.  Tell us how you first got involved in patient advocacy work.

As per my PatientsLikeMe profile, this started in 2001. Two years after the loss of my only sibling to vCJD, I was approached by a UK organization called the Human BSE Foundation to act as their Vice-Chair. Quite a daunting task for a 33-year-old!! I was involved in that capacity until 2005. Over the years, my interests in science and information sharing to this day continue to diversify.

I’m a great believer in complete openness and transparency as anyone who knows me in real life or via the Internet knows. One of my key assets seems to be “connecting people,” something that I started doing at the age of four. I enjoy making new connections and this is made so much easier with the advent of the web.

2.  You’ve been a member of PatientsLikeMe since 2007.  What key changes have you seen the site go through in that time?

I am not 100% sure where I first found out about PatientsLikeMe but it was most probably via the main ALS TDI Forum. I’m not a “regular” PatientsLikeMe forum poster with only 197 posts since February 2007. Some key changes that spring to mind: the addition of a PatientsLikeMe blog was a great development. A couple of years ago, a “Share This” button was added to the blog making it much, much easier to share content via social networking sites, etc.

The PatientsLikeMe platform itself has expanded in many ways since 2007. At that time, if I recall correctly, ALS/MND was the only disease covered. Now, that has increased to >1,200 conditions, so that alone is a major development. New features get rolled out on a regular basis and they are accompanied with good and clear explanations. It’s also much easier to ‘drill down’ to/for specific content, and the site is generally simpler to navigate than back in 2007, IMHO.

3.  You have recently campaigned for open access publishing. Why is this important to patients?

Yes, as of late 2006, I stumbled upon my first Open Access (OA) Manuscript, as it happened via Public Library of Science Pathogens. Up until that point, I had assumed that ALL Scientific, Technical & Medical (STM) content was locked up behind paywalls. As such, it was very enlightening to discover an alternative to traditional publishing. As matters stand though, only ~15% of Peer Reviewed STM Manuscripts are OA, and subscription-based publishing is still “the norm.” The reason that I became part of the OA Community was to use my networking skills to make more people aware of and involved in OA. OA itself however is just one cog (but a significant one) in the wheel of Open Science!!

“Why is OA important to patients?” Where does one start?! One of the best recent responses to that question comes from PatientsLikeMe’s very own Dr. Paul Wicks with his guest post over at the Public Library of Science Blogs dated June 14th, 2012, and entitled “Open Access Is Not For Scientists. It’s For Patients.”

Two key sections of that post that stood out for myself most were:

“In the past six years, we’ve found that more and more patients are trying to access research studies written about them, including studies where they were participants. In addition, they are increasingly capable of understanding them. Yet closed access is locking them out of better understanding their conditions and their choices.”

And…

“As a society, we need to recognize that our understanding of disease doesn’t belong to science. It belongs to the patients (who are also usually our funders, by the way), and we should exist only to serve them.”

4.  What do you see as being critical for the future of patient advocacy?

The Internet, Open Data and The Semantic Web. In terms of the sharing of data from patients, PatientsLikeMe was the first platform (that I am aware of) that made it easy for patients to share their data online with others. Whilst this data is “open,” it is open to the PatientsLikeMe community (and selected others) but not open at large. As stated in June this year by Sir Paul Nurse, “the President of the Royal Society said there was a need to put safeguards in place to protect confidentiality.” Sir Paul said that in reality no data was “totally secure” and that doctors already relied on personal information for treatment. “If you want a complete guarantee of privacy you would have to diagnose and treat yourself,” he said. (Also, see the recent “Science as an open enterprise” report by The Royal Society).

In terms of the semantic web and link data, entities such as http://linkeddata.org/ and http://www.linkeddatatools.com/ have a lot of potential in terms of what we can do in a linked up world. Also in June, in his talk at TED Global entitled “Unreasonable People Unite,” John Wilbanks made a number of interesting points. From the TED Blog:

“Wilbanks’ proposal is a medical commons, a way for people to gather this medical data and share it freely. People are neurotic about privacy and keeping control of their data. ‘Some of us like to share as control.’ And, he believes we live in an age where people agree with him. He mentions a study run at Vanderbilt University in Tennessee. ‘It’s not the most science-positive state in America,’ he says. ‘Only 5% wanted out. People like to share if given the opportunity and choice.’ And not using this data to understand health issues through mathematical analysis ‘is like having a giant set of power tools but leaving them not plugged in while using hand saws.’”

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

What Air Traffic Can Teach Us About Kidney Transplants
Air traffic rules balance fairness and efficiency. Can organ waitlists do the same?

Open Access Is Not for Scientists.  It’s for Patients.
A guest blog post by our R&D Director, Paul Wicks, for the Public Library of Science.

Snake Oil?  Scientific Evidence for Health Supplements
A very cool health data visualization from Information Is Beautiful.

Facebook Urges Readers to Add Organ Donor Status
Are you going to add your organ donor status?

Glenn Close:  Let’s End the Stigma Around Mental Illness
A great look at how we discuss mental illness – and the impact our words can have.

What are you reading?  Share your recommendations in the comments section.