There’s been a lot of awareness going on for ALS with the IceBucketChallenge, and to help keep the momentum going, PatientsLikeMe member Dee (redrockmama) shared her personal experiences with the neurological condition. She made the decision to install a feeding tube early in her journey, and now she is managing her weight through overnight… Continue reading “Speak up!” PatientsLikeMe member Dee speaks about her journey with ALS
Category: Patient Experiences
Nola’s new bathroom
It’s rare that we’re surprised by the power of connection in the PatientsLikeMe community—we see members connect everyday and transform their lives through the exchange of information. This story extends beyond shared knowledge, though; it displays the powerful bonds of internet friends who offered truly life-changing support from opposite coasts. Below, listen to them tell… Continue reading Nola’s new bathroom
“Treat the person, not the disease.” An interview with nurse practitioner Phyllis Zimmer
Family Nurse Practitioner Phyllis Zimmer has a Master’s degree in Nursing and is a Fellow at both the American Academy of Nursing and the American Association of Nurse Practitioners. It sounds like Phyllis always knew she wanted to be a nurse, but truth be told, Phyllis wasn’t sure what her career path would be until… Continue reading “Treat the person, not the disease.” An interview with nurse practitioner Phyllis Zimmer
Let the world know about pulmonary fibrosis
On Rare Disease Day back in February 2013, we announced our partnership with Boehringer Ingelheim to help enhance the online idiopathic pulmonary fibrosis (IPF) community. And by September 7th that same year, the community had grown to just over 1,000 people. Today, on the next edition of Global Pulmonary Fibrosis Awareness Day, the community stands 2,500+… Continue reading Let the world know about pulmonary fibrosis
Throwback Thursday: Jamie talks about the future of medicine
It’s Throwback Thursday, so today we decided to share a talk our founder, Jamie Heywood, gave at the Government 2.0 Summit back in September 2009. He spoke about how we can better answer this question for patients: “Given my status, what is the best outcome I can achieve and how do I get there?” Watch what… Continue reading Throwback Thursday: Jamie talks about the future of medicine
Food for thought: August edition
Are you trying to lose weight in time for the fall? Or are you hoping to gain a few pounds instead? Weight fluctuation is a part of everyone’s life, and PatientsLikeMe members have been sharing about their weight management in the forum, everything from the Primal Blueprint 21-day diet to alternative substitutes for pasta and… Continue reading Food for thought: August edition
Results! PatientsLikeMe diabetes members share about challenges and concerns
Earlier this year, more than 450 PatientsLikeMe members from the type 1 and type 2 diabetes communities took part in a new survey from our partners at Kaiser Permanente Colorado’s Institute of Health Research. (Thank you all for adding your voices!) Members shared about everything from the day-to-day challenges of living with diabetes to the… Continue reading Results! PatientsLikeMe diabetes members share about challenges and concerns
Seeing [MS]: The invisible symptoms – pain
“I’m burnt alive every day.” That’s how Stephen Papadopoulos, an Australian living with multiple sclerosis (MS), describes the level of pain he experiences on a daily basis. Pain is the second of nine symptoms portrayed in the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] awareness campaign, and Stephen details his experience in the video… Continue reading Seeing [MS]: The invisible symptoms – pain
“This is a very serious issue” – PatientsLikeMe member Jess shares about her PTSD
Talking about past trauma isn’t easy – so we want to say thank you to Jess right off the bat. She’s a PatientsLikeMe member who suffered a TBI, and she recently talked with us about her experiences. Jess walked us through her accident and her diagnosis and went on to explain that even though you… Continue reading “This is a very serious issue” – PatientsLikeMe member Jess shares about her PTSD
Putting the spotlight on ALS
If you follow PatientsLikeMe on Twitter or Facebook, you might be wondering why our staff decided to dump ice water all over their heads this past week. Well, here’s what’s up: it all about raising awareness for ALS. It began in 2012, when local Boston College alumnus Pete Frates was diagnosed with amyotrophic lateral sclerosis… Continue reading Putting the spotlight on ALS