Organ Transplants

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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What We’re Reading at PatientsLikeMe

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 …

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PatientsLikeMe Featured on Bloomberg TV

On October 9th, Bloomberg TV aired a four-and-a-half minute “Innovators” segment profiling PatientsLikeMe’s journey as 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.” Visit our Press page for other recent PatientsLikeMe media highlights. Watch the Bloomberg TV profile below:

The Joy of Being Helpful

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 …

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Know Your ABC’s on World Hepatitis Day

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 …

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The Importance of Open Access: An Interview with Patient Advocate Graham Steel

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 …

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What We’re Reading at PatientsLikeMe

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.

Women’s Health Week: “It’s Your Time”

Ladies, we know your lives get busy.  So why not pull out your calendar or smartphone right now and see if you’re due for a visit to your health care providers?  You’ll be doing your part for National Women’s Checkup Day (observed today, Monday, May 14th), an annual event that’s part of National Women’s Health Week. Checkup Day encourages women to get regular checkups that are vital to the early detection of heart disease, diabetes, cancer, mental illnesses, sexually transmitted infections and other conditions.  The reason is simple.  Women often serve as the caregivers for their partners, children and parents. As a result, their own well-being can be secondary at times.  The theme of National Women’s Health Week 2012 – “It’s Your Time” – speaks to the fact that women need to prioritize their own health as well. Not sure what preventative screenings are recommended for you?  Check out this handy chart organized by age group.  Then take the Checkup Day pledge along with women around the country to get at least one recommended screening during May. If you’re concerned about cost, you should know that all recommended preventative screenings – such as mammograms, colon cancer screenings, Pap screenings and …

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Preparing for Life After an Organ Transplant

Last week, we shared our interview with a liver transplant recipient who is living out her dreams post-transplant.  Today we’d like to add the insights of 32 organ transplant recipients who took part in an online discussion hosted by PatientsLikeMe.  Split equally in gender with ages ranging from 25 to 60 years old, our discussion group reported 43 organ transplants amongst them, more than half of which were kidney transplants.  Liver, lung, heart and pancreas transplants were also represented. What did these 32 patients have to say about life after transplantation?  What do they wish they’d known earlier?  From anti-rejection medication side effects to ongoing expenses, we’ve collated some of the key themes from this eye-opening discussion in a new report entitled The Patient Voice: Preparing for Life After an Organ Transplant. If someone you love is awaiting a life-saving transplant – or you’re a transplant candidate yourself – don’t miss this collection of real-world tips, experiences and checklists.  Also, please share this free report with anyone who might find it useful. Do you know someone living with a mental health condition such as bipolar II disorder, alcohol addiction or major depressive disorder?  Check out our previous report about getting …

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Love Your Scars: An Interview with Transplant Recipient Amy Tippins

After five years of dealing with undiagnosed multiple hepatic adenomas (hemorrhaging tumors), PatientsLikeMe member Amy Tippins underwent a liver transplant in 1993.  Two years ago, she received a ligament allograft using donor tissue.  How does she feel about it all today?  Check out our interview with this transplant activist to learn how these experiences led her to found RockScar Love, a clothing company that celebrates sexy scars, the lessons they teach and the strength they create. 1.  Tell us about your post-transplant life today. My life is amazing now.  When I was sick, I had goals of things I wanted to do over the years that I have started checking off my “accomplished” list.   I own my second house, I have learned how to surf, I currently do spin class for exercise, I own my own business.  My life has unlimited possibilities, and I am excited to see how I will continue to pay it forward. 2.  What led you to launch Rock Scar Love and the “Scars R Sexy” campaign? I started RockScar Love Designs because I wanted to do something with my life that was inspiring.  When I was young and was coming out of my medical challenges I felt that …

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