Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys in short videos and even posted about their favorite food recipes.
A heartfelt thanks to everyone who shared their experiences this year – the PatientsLikeMe community is continuing to change healthcare for good, and together, we can help each other live better as we move into 2015.
Team of Advisors
In September, we announced the first-ever PatientsLikeMe Team of Advisors, a group of 14 members that will work with us this year on research-related initiatives. They’ve been giving regular feedback about how PatientsLikeMe research can be even more helpful, including creating a “guide” that highlights new standards for researchers to better engage with patients. We introduced everyone to three so far, and look forward to highlighting the rest of team in 2015.
- Meet Becky – Becky is a former family nurse practitioner, and she’s a medically retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer.
- Meet Lisa – Lisa was diagnosed with Parkinson’s disease (PD) in 2008, and just recently stopped working as a full-time executive due to non-motor PD symptoms like loss of function, mental fatigue and daytime insomnolence. Her daughter was just married in June.
- Meet Dana – Dana is a poet and screenplay writer living in New Jersey and a very active member of the mental health and behavior forum. She’s living with bipolar II, and she’s very passionate about fighting the stigma of mental illness.
The Patient Voice
Five members shared about their health journeys in short video vignettes.
- Garth – After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school.
- Letitia – has been experiencing seizures since she was ten years old, and she turned to others living with epilepsy on PatientsLikeMe.
- Bryan – Bryan passed away earlier in 2014, but his memory lives on through the data he shared about idiopathic pulmonary fibrosis. He was also an inaugural member of the Team of Advisors.
- Becca – Becca shared her experiences with fibromyalgia and how she appreciates her support on PatientsLikeMe.
- Ed – Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort.
More than 30 members living with 9 different conditions shared their stories in blog interviews.
Members living with PTSD:
- David Jurado spoke in a Veteran’s podcast about returning home and life after serving
- Lucas shared about recurring nightmares, insomnia and quitting alcohol
- Jess talked about living with TBI and her invisible symptoms
- Jennifer shared about coping with triggers and leaning on her PatientsLikeMe community
Member living with Bipolar:
Members living with MS:
- Fred takes you on a visual journey through his daily life with MS
- Anna shared about the benefits of a motorized scooter, and a personal poem
- Ajcoia, Special1, and CKBeagle shared how they raise awareness through PatientsLikeMeInMotion™
- Nola and Gary spoke in a Podcast on how a PatientsLikeMe connection led to a new bathroom
- Tam takes you into a day with the private, invisible pain of MS
- Debbie shared what it’s like to be a mom and blogger living with MS
- Shep spoke about keeping his sense of humor through his journey with MS
- Kim shared about her fundraising efforts through PatientsLikeMeInMotion™
- Jazz1982 shared how she eliminates the stigma surrounding MS
- Starla talked about MS awareness and the simple pleasure of riding a motorcycle
Members living with Idiopathic pulmonary fibrosis:
- LaurCT reported back from the FDA’s conference on IPF
- Lori shared about life on the lung transplant list and surviving IPF
- Barbara shared her unique approach to managing IPF
- John shared about portable oxygen and the positive moments of his new normal
Members living with Parkinson’s disease:
- Dropsies shared about her frustrating Parkinson’s diagnosis experience and how diabetes might impact her future eating habits
Members living with ALS:
- Steve shared the story behind his film, “My Motor Neuron Disease Made Easier”
- Steven shared how technology allows him to participate in many events
- Steve shared about creating the Steve Saling ALS residence and dealing with paramedics
- Steve told why he participated in the Ice Bucket Challenge
- Dee revealed her tough decision to insert a feeding tube
- John shared about his cross-country road trip with his dog, Molly
Members living with lung cancer:
- Vickie shared about her reaction to getting diagnosed, the anxiety-filled months leading up to surgery and what recovery was like post-operation
- Phil shared the reaction she had after her blunt diagnosis, her treatment options and her son’s new tattoo
Members living with multiple myeloma:
- AbeSapien shared about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding
Caregiver for a son living with AKU:
- Alycia and Nate shared Alycia’s role and philosophy as caregiver to young Nate, who is living with AKU
Food for Thought
Many members shared their recipes and diet-related advice on the forums in 2014.
- April – first edition, and what you’re making for dinner
- May – nutrition questions and the primal blueprint
- June – getting sleepy after steak and managing diet
- July – chocolate edition
- August – losing weight and subbing carbs
- September – fall weather and autumn recipes
- Dropsies – shared her special diabetes recipes for Diabetes Awareness Month
Patients as Partners
More than 6,000 members answered questions about their health and gave feedback on the PatientsLikeMe Open Research Exchange (ORE) platform. ORE gives patients the chance to not only check an answer box, but also share their opinion about each question in a researcher’s health measure. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.
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