Conditions Archives

Going the distance for MS awareness

Meet Cheryl (CherylRunner), a marathoner living with MS. Since it’s MS Awareness Month, we sat down to chat with her about what she’s doing to raise awareness: running 7 marathons on 7 continents in a 12-month span. So far under her belt are South Africa, Argentina, Hawaii, Antarctica and Japan, and now she prepares to… Continue reading Going the distance for MS awareness

Lady Gaga reveals her struggle with PTSD

Musician Lady Gaga recently revealed in an open letter that she is living with PTSD. In the letter, posted to the Born This Way Foundation website, she discussed her struggle with the condition since being sexually assaulted as a teenager: “I have wrestled for some time about when, how and if I should reveal my… Continue reading Lady Gaga reveals her struggle with PTSD

Member Kimberly opens up about living with a rare disease

Today is Rare Disease Day 2017, and to raise awareness Kimberly (firefly84), a member of the 2016-2017 Team of Advisors, recently shared some of her experiences living with autonomic neuropathy, a rare disease: “Perhaps you’ve heard the saying ‘when you hear hoof beats, think of horses not zebras,’ but I am the zebra in that… Continue reading Member Kimberly opens up about living with a rare disease

“I think there needs to be a national-level dialogue about it”: Eleni Pinnow on depression, suicide and her sister’s story

“Aletha Meyer Pinnow, 31 … died from depression and suicide on Feb. 20, 2016.” So begins the obituary that Eleni Pinnow penned about her sister for the Duluth (Minn.) News Tribune. The candid obit went viral and struck a chord with countless readers – in the mental health community and beyond – so Eleni followed… Continue reading “I think there needs to be a national-level dialogue about it”: Eleni Pinnow on depression, suicide and her sister’s story

Member Chris finds the uplifting side of type 1 diabetes

“I am the only 7-fingered diabetic record-holding powerlifter and motivational speaker you know!” Chris (ChrisRuden) says in his profile. He was born with two fingers on his left hand and a shorter left arm. He was bullied in high school, and he struggled with depression, alcohol and drug use. Chris was diagnosed with diabetes at… Continue reading Member Chris finds the uplifting side of type 1 diabetes

Communicating drug risks/benefits so the message really gets through

Last month, Jim, a member of the PatientsLikeMe Team of Advisors, was invited by Sally Okun, PatientsLikeMe’s VP Advocacy, Policy & Patient Safety, to present at the Drug Information Association (DIA) Pharmacovigilance Conference. He also led a lunch roundtable for drug risk/benefit communications experts. Sally, who also participated on the roundtable panel, says requests for… Continue reading Communicating drug risks/benefits so the message really gets through

“I feel it needs to be told”: Member Cathy shares a memory

Last year, we spoke with Cathy (Catrin) about her experience transitioning into a caregiver role for her husband, Fred, who was living with bulbar onset ALS. Shortly after that, Fred passed away, and to mark the year of his passing, Cathy recently shared the following memory. Here’s what she had to say… “I have been… Continue reading “I feel it needs to be told”: Member Cathy shares a memory

Meet Christopher – “PTSD is not just soldiers whining and complaining about struggles in life”

Say hello to Christopher (ChrisBC), a father, musician and Purple Heart recipient living with PTSD and bipolar disorder. We recently caught up with him to hear about how PTSD affected his marriage and how his diagnosis pushed him get the help he needed and connect with his feelings. Keep reading to learn how he copes… Continue reading Meet Christopher – “PTSD is not just soldiers whining and complaining about struggles in life”

France flips the rules on organ donation

February 14th isn’t just Valentine’s day, it’s also National Donor Day. Did you know there are currently around 120,000 people waiting for a life-saving organ donation in the United States today? What better time to take a look at some of the measures other countries around the world are taking in order to combat their… Continue reading France flips the rules on organ donation

Meet Lindsay from the PatientsLikeMe Team of Advisors

Meet Lindsay (Shyandspicy), a member of the PatientsLikeMe 2016-2017 Team of Advisors living with bipolar II, fibromyalgia and diabetes. We recently caught up with Lindsay to learn how she finds purpose in her relationships with her family, her faith and helping others. Keep reading to get to know her story and how she tackles… Continue reading Meet Lindsay from the PatientsLikeMe Team of Advisors