Organ Transplants

France flips the rules on organ donation

February 14th isn’t just Valentine’s day, it’s also National Donor Day. Did you know there are currently around 120,000 people waiting for a life-saving organ donation in the United States today? What better time to take a look at some of the measures other countries around the world are taking in order to combat their own long donor waiting lists. Earlier this year, France made headlines by reversing its policy on organ donations so that all citizens are automatically presumed donors upon their death unless they join an official “opt-out” registry. Before that, unless the deceased person had made it known they did not wish to donate their organs, doctors were required to consult relatives, who in almost 30% of cases refused. The “opt-out” registry has garnered about 150,000 sign-ups so far. France isn’t the only country to take an “opt-out” stance on organ donation. Countries like Belgium and Austria have also applied similar rules, and perhaps unsurprisingly, they see extremely high organ donation rates that hover around 98% and 99%. The list of registered organ donors in the US sits at around 48% of the population. So, let’s take a look at some facts from the American Transplant Foundation …

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Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results

Back at the beginning of April, we launched a new blog series called Patients as Partners that highlights the results and feedback PatientsLikeMe members give to questionnaires on our Open Research Exchange (ORE) platform. This time around, we’re sharing the results of the Perceived Medical Condition Self-Management Scale (PMCSMS), a health measure that looks at how confident people are in managing their own conditions. More than 1,500 members from 9 different condition communities on PatientsLikeMe took part. They worked with our research partner Ken Wallston from Vanderbilt University to make the tool the best it can be. (Thank you to everyone that participated! This is your data doing good.) Check out the PMCSMS results and keep your eyes peeled for more ORE questionnaire results as we continue the series on the blog. What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

Living with Idiopathic Pulmonary Fibrosis

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 more than 900 IPF patients. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal …

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Give the Gift of Life on National Donor Day

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 …

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Coping with Changes in Physical Appearance

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 …

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Live Better Together in 2013

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!

A Patient Poem for the Modern Age

Can you be friends with someone you’ve never met in person? The members of our online health community – now 300, 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.

Not Recognizing the “New Me”

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. …

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Honoring Family Caregivers Everywhere

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 …

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What’s Positive About Disease?

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 …

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