What would you do if you were living with seizures from epilepsy since you were ten years old? And you weren’t even able to drive a car? Letitia turned others living with epilepsy on PatientsLikeMe and shared about her journey in a recent video. Watch above to see her inspiring story, and how… Continue reading The Patient Voice- Epilepsy member Letitia shares her story
Category: Conditions
Living with a health condition? On the PatientsLikeMe blog, find helpful health information and patient stories about being diagnosed, trying different treatments, and living day-to-day with a chronic condition.
“Bang for the buck.” PatientsLikeMe member Steve shares about his experiences with ALS and the IceBucketChallenge
Ice + water + video camera = a viral ALS awareness campaign that has spread over social media and the news like wildfire. Millions of dollars has been raised for ALS research while more and more, people are learning about this neurological condition. Recently, PatientsLikeMe member Steve (who has been living with ALS since 2009)… Continue reading “Bang for the buck.” PatientsLikeMe member Steve shares about his experiences with ALS and the IceBucketChallenge
Shining the spotlight on pulmonary fibrosis
You may have seen our post on Pulmonary Fibrosis Awareness Day, but did you know September is also Pulmonary Fibrosis Awareness Month? The Pulmonary Fibrosis Foundation (PFF) wants everyone to shine the spotlight on idiopathic pulmonary fibrosis (IPF), and many PatientsLikeMe members have already shared their stories – Lori documented her journey from diagnosis… Continue reading Shining the spotlight on pulmonary fibrosis
“Speak up!” PatientsLikeMe member Dee speaks about her journey with ALS
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
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
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
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
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
“MS doesn’t define anyone” – PatientsLikeMe member Anna shares about her journey with MS
We’ve had the pleasure of featuring many PatientsLikeMe members on the blog, but never one with a nickname quite like this. Anna is living with MS and we caught up with her to talk about coping, finding support, her motorized scooter and where the name “Mad Anna” comes from. Read below to see what life… Continue reading “MS doesn’t define anyone” – PatientsLikeMe member Anna shares about her journey with MS