March is Brain Injury Awareness Month, so we’re sharing the story of Roxana Delgado, whose husband Victor is one of the 2.5 million Americans who survive traumatic brain injuries (TBIs) each year.1 In this video from our partners at One Mind, Roxana opens up about the challenges of caring for Victor after he suffered a… Continue reading Brain Injury Awareness Month: Roxana’s story from our partners at One Mind
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.
Meet Laura from the PatientsLikeMe Team of Advisors
We’d like to introduce you to Laura, another member of your 2015-2016 Team of Advisors. When Laura was diagnosed in 2013, she’d never heard of Idiopathic Pulmonary Fibrosis (IPF). Flash forward three years, and she’s made patient education and advocacy her main focus. Laura has spoken before the FDA, regularly blogs about IPF on various… Continue reading Meet Laura from the PatientsLikeMe Team of Advisors
A year of milestones for Team Gleason – and they’re not slowing down.
Three years ago, we posted a piece on Steve Gleason, former NFL player for the New Orleans Saints. Diagnosed with ALS in 2011, Steve has made it his mission to spread awareness and advocacy. Since then, Team Gleason has been hard at work to improve the lives of those living with ALS and 2015 proved… Continue reading A year of milestones for Team Gleason – and they’re not slowing down.
MS and Pregnancy – From our Partners at MotherToBaby for MS Awareness Month”
It’s MS Awareness Month, and this year, we’re focusing on how the condition affects pregnant women and their babies. Our partners at MotherToBaby recently shared an article that answers some of the questions that might come up for women who have MS and are thinking about having children. Check it out below… MS: The Diagnosis… Continue reading MS and Pregnancy – From our Partners at MotherToBaby for MS Awareness Month”
“It does not define me!” Member Marcia shares her story for Myeloma Action Month
March is Myeloma Action Month, a time to raise awareness for the second most common blood cancer that affects 750,000 people worldwide — and over 2,500 PatientsLikeMe members. One of those members is Marcia (marcia_holman), who was given six months to live when she was diagnosed. Fifteen years later, Marcia sat down with us to… Continue reading “It does not define me!” Member Marcia shares her story for Myeloma Action Month
Touched with fire: Reframing the dialogue of bipolar
We’ve talked a lot with new PatientsLikeMe member Paul, diving into issues like getting a diagnosis, management and coping, and overcoming stigma. Now, Paul is sharing how he’s trying to change the conversation about bipolar through his debut feature film, Touched with Fire. Here he talks about framing Touched with Fire as a love story because in a condition defined… Continue reading Touched with fire: Reframing the dialogue of bipolar
Meet Angela from the PatientsLikeMe Team of Advisors
Say hello to Angela, another member of your 2015-2016 Team of Advisors. When she was diagnosed with MS in 2010, Angela was writing a book while balancing a busy schedule as a university lecturer and community volunteer. Angela sat down with us recently to talk about the new challenges of leading the life she wants… Continue reading Meet Angela from the PatientsLikeMe Team of Advisors
Meet Phyllis from the 2015-2016 Team of Advisors
We’d like to introduce you to Phyllis, another member of your 2015-2016 Team of Advisors. Phyllis is living with Cutaneous T-Cell Lymphoma (CTCL) as well as Hodgkin’s lymphoma. Still, the former mayor of Princeton, NJ, leads an active life by spending time with her grandchildren, cheering on the Mets and taking brisk walks when she… Continue reading Meet Phyllis from the 2015-2016 Team of Advisors
Oceans of Hope: An interview with PatientsLikeMe member Beth
Beth (sailebeb) has been living with MS since 2010, but it hasn’t stopped her from leading an active lifestyle. In the spring of 2015, she joined a crew of MS patients on a sailing trip from Tahiti to American Samoa. The journey was organized by the Sailing Sclerosis project, Oceans of Hope, to change perceptions that people… Continue reading Oceans of Hope: An interview with PatientsLikeMe member Beth
“We are the ones that know what is required to give us the care we deserve” — Member Ann shares her story for Rare Disease Day
February 29 only comes around every four years – and this year, it’s extra special: Today marks the 9th annual Rare Disease Day. In the United States, a disease is considered rare if it affects less than 200,000 people at any given time.1 This year’s theme is all about elevating the patient voice, so we caught up with… Continue reading “We are the ones that know what is required to give us the care we deserve” — Member Ann shares her story for Rare Disease Day