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.
The National Multiple Sclerosis Society (NMSS) has put together a video showing all of the ways MS impacts individuals, families and society. For example, did you know that MS costs the US economy $28 billion each year? Or the average MS patient $69,000 per year? Another startling fact is that the average person with MS leaves the workforce 10 years after diagnosis. (Most are diagnosed in their 20s and 30s). Check out the video above to discover more about how MS impacts you, even if you don’t know anyone with the condition.
As for an accurate picture of life with MS, the best descriptions come from those who know best – MS patients. In a recent discussion in our MS forum, patients asked each other what one word they think best sums up life with this chronic, often disabling disease of the central nervous system. What were their responses? Here is a word cloud illustrating 30+ answers submitted by our community.
Putting words together in a full portrait, below is a poem by friendinflare, a three-star MS member who has lived with MS for 10 years. Not only does she depict some of the issues MS patients face, but she also speaks to the relief that comes from sharing your experiences with others like you. (At PatientsLikeMe, you can share treatment and symptom data, status updates, private messages, forum discussions and much more.)
In early November, I discovered a website.
A place where MS’rs can talk about our plight.
Our symptoms are as varied as our usernames.
There are threads for information, advice and even games.
We have legs of jello, vision that’s blurred,
And limbs that tremble from damaged nerves.
We still remain hopeful – but no one’s been cured.
“Daily injections will help” our doctors have reassured. Our fatigue gets so bad we are glued to our beds,
We have cognitive issues from lesions in our heads.
Most don’t understand us, we’re a breed of our own.
We talk everyday without picking up a phone.
Our computers are a lifeline to hope,
Letting us talk with MS’rs from all over the globe.
Even though fights can break out at lightning speed, Members always support those in need.
Here’s to everyone at PatientsLikeMe.
Getting a clearer picture of MS? Good – but there’s even more to come. Stay tuned for our two-part interview with an MS patient who authored a book called “The Dumbest Things Smart People Say to Folks with MS.”
I recently had a chance to speak about PatientsLikeMe at the 3rd Annual Comal County Parkinson’s Support Group Symposium, held in New Braunfels, Texas, on Saturday October 1, 2011. Both the event and the support group were started by one of our longtime members, daddytom, who’s been part of PatientsLikeMe since 2007. As daddytom said:
“In July 2007 after much prodding from my bride…and my neurologist, I started the Comal County Parkinson’s Support Group. Thought I’d get it going then bow out after three or four months…Three and a half years later we have grown from six people to having over 160 folks registered with us…We have gone from meeting once a month to twice a month…What started as a laborious project has turned into a project of love.”
This year’s symposium featured presentations by two neurologists, Dr. Vikki Alvarez and Dr. Michael Merren, as well a presentation by a local speech pathologist. It was a great event to help educate and support Parkinson’s patients and their families in the Comal County area.
The audience included roughly 100 people, primarily Parkinson’s patients and their caregivers. I had a chance to meet a group of PatientsLikeMe members, and it was great to hear them talk about some of the ways they use PatientsLikeMe – as a support system, as a place to ask and answer questions from other ‘Parkies’ and as a resource for finding out more about what to expect as their Parkinson’s disease progressed.
What a great experience to meet some PatientsLikeMe members face to face. While we can’t be at every support group meeting, we’ve produced some great materials to help you talk about PatientsLikeMe with your own support group. Visit the Tell the World! page to find PatientsLikeMe flyers, slide decks and business cards.
“I got this call from my brother Stephen, and he said the news doesn’t look good.At that point, he’d been through enough processes to know what that meant – he had ALS.So I began this journey with my brother and my family…. We were thinking there had to be a way to make this about the patient.But it started like everyone else. You get that phone call, and your life changes.” – Jamie Heywood, Co-Founder
Tune in below to hear where it all started and why, five years later, we’re committed to continuing the journey we’re all on – as a company, as patients and as family members of those affected by disease.
As we mentioned in our blog post last week, our PatientsLikeMeInMotion program is off to a running start this year with more than 30 sponsored teams thus far.What does one of these run/walk/bike teams look like?Below is Team Sylvan, a 40-person team led by ALS patient Panda155.
Decked out in bright blue PatientsLikeMe t-shirts, Team Sylvan took to the streets for the ALSTDI Cure Is Coming Walk, held on May 7, 2011, in Lexington, Massachusetts.This is the third year that they’ve been sponsored by PatientsLikeMeInMotion, which makes them one of our veteran superstar teams.
Congrats to Team Sylvan and all of our 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 inspiring PatientsLikeMeInMotion team photos, check out our new Flickr slideshow.
Organizing a team for this fall? Sign up for PatientsLikeMeInMotion today.
Do you know someone who has a child with ASD?Currently, patients under the age of 20 comprise the largest segment of our ASD patient membership.As a result, we’ve created a leaflet for parents of children with ASD that explains the benefits of joining PatientsLikeMe as a parent/caregiver.
Click on the leaflet image below for a full-size, printable version:
Imagine the knowledge and support you could gain from finding other children like your child – or other parents like you.Because when you connect with others like you, you can learn what’s normal.You can see how other families are approaching treatment.Most importantly, you can discuss ASD challenges with people that truly understand.
We look forward to the continued growth of our ASD membership.If you know a family affected by ASD, please pass along this leaflet today.
The submissions are in and it’s now time for you to decide the winners of the first-ever PatientsLikeMe Video Contest! We asked “How has PatientsLikeMe changed your life?” and our members have worked long and hard to prepare their answers in these memorable videos. Take a look and vote for your favorite!
There are 5 winners chosen for this contest and your votes decide 3 of them! The creators of the top 3 voted videos will win American Express gift cards ranging from $150 – $500 (see contest rules for more details). The deadline for voting is June 3, 2011. Anyone and everyone can vote, so be sure share to tell your friends and family. Use “Share This” button on the video contest page to post on Facebook, Twitter (#PLMExpressYourself), etc.
“We’re just getting started on a long road to really impact your individual disease and your quality of life…”
Each week this month, we’ll be posting a video interview with a member of the PatientsLikeMe executive team. You’ll hear from Ben Heywood, Jamie Heywood, David S. Williams and Paul Wicks, Ph.D. about what the recent changes to PatientsLikeMe mean for patients, research, industry and the entire medical establishment.
Today, listen in to hear what Ben has to say about why we’re on this “road,” what has been improved with the recent upgrades and how sharing your own health journey moves us forward. You can also see last week’s video teaser here.
If you haven’t heard, we are asking patients to create a video of three minutes or less that answers the question, “How has PatientsLikeMe changed your life?” If you are thinking of entering the contest but not sure how to express yourself, here are some examples of how patients have answered this question:
“PatientsLikeMe is the main reason that I concluded I had been mis-diagnosed depressive, instead of bipolar, and just recently decided to try new medication.”
“For years, I had always taken just 10mg of Baclofen. I was told long ago by my neurologist that “too much Baclofen can cause weak legs.” Then I sign up here, take a peek at what you guys are doing, and find out I don’t take enough Baclofen to deal with my symptoms. Give the neurologist a call, no problem, and [I am] much, much better.”
“PatientsLikeMe has changed my life. This is my outlet. I shared and poured my heart…and connected with hundreds of people around the world.”
Wondering how would you express such things on video? Check out the submission below from one of our first contest entrants, Roulette67. Her video is titled “I Am Not Alone,” and it discusses living with bipolar II disorder. “I’m bipolar, it’s not a brand on my arm, it’s not a scarlet letter on my chest,” she says in the video. “It’s part of me, but it’s not me.”
Do you have your own story to share? Tell it to the camera, like Roulette67. Or you could sing a song. Or perhaps combine photos with text to illustrate your experience. There are countless ways to express yourself using video, so be creative!
If you’re feeling inspired to enter, read the complete rules and guidelines before you get started, and don’t forget that May 1, 2011, at 11:59 p.m. EDT is the official submission deadline.