In honor of National Women’s Health Week, Team of Advisors member Ginny (Mrslinkgetter) shares what it’s like to live with multiple health conditions – including major depressive disorder (MDD), generalized anxiety disorder and epilepsy – as well as grief following the death of her son (who also had epilepsy and major depression). On PatientsLikeMe, hundreds… Continue reading Women’s Health Week: Ginny reflects on motherhood and “the perfect storm” of epilepsy and mental health conditions
Tag: Epilepsy
Meet Ginny from the PatientsLikeMe Team of Advisors
Say hello to Ginny (Mrslinkgetter), a case manager and family partner with Youth Mobile Crisis Intervention living with depression and epilepsy. She’s also a member of the 2016-2017 Team of Advisors. Check out what Ginny had to say about living with depression and epilepsy, the loss of her son, and how being her own advocate… Continue reading Meet Ginny from the PatientsLikeMe Team of Advisors
In her own words: Letitia shares about her new brain for Epilepsy Awareness Month
Have you met Letitia (Letitia81) from the epilepsy community? Four years ago, her research on PatientsLikeMe led her to the brain surgery that forever changed her life — she’s now seizure-free after three decades. Things are much different now for Letitia, and she’s written all about her before and after in a recent article for… Continue reading In her own words: Letitia shares about her new brain for Epilepsy Awareness Month
“I am working on all of it slowly” — Member David opens up about his experience with PTS
Meet member David (david61060), a United States Air Force veteran who’s living with multiple conditions including PTS, sleep apnea, and epilepsy. When we caught up with him, David shared what it was like to grow up as a “navy brat,” his experience in the military, and how It took him more than nine years to… Continue reading “I am working on all of it slowly” — Member David opens up about his experience with PTS
Epilepsy Awareness Month: The value in helping others
It’s November, which means it’s Epilepsy Awareness Month. During our #NotAlone campaign, we shared how PatientsLikeMe member Letitia’s experience on the site helped her feel less alone in living with epilepsy. Letitia (Letitia81), a member of our 2014-2015 Team of Advisors, explains: “I enjoyed connecting with others suffering from seizures and exchanged ideas about diagnostic… Continue reading Epilepsy Awareness Month: The value in helping others
A bold choice to fight epilepsy
As originally seen on the Tampa General Hospital News Center website It was scary enough for Letitia Browne-James’ parents to witness their child’s epileptic seizures. But they were also frightened when a doctor suggested brain surgery for their 12-year-old. “My parents said ‘no way,’” Browne-James said. “It was a very scary thought.” They tried medications,… Continue reading A bold choice to fight epilepsy
Taking control: from PatientsLikeMe member Letitia and our friends at the Partnership to Improve Patient Care
Many of you have already met Letitia. She’s part of the PatientsLikeMe epilepsy community, and from her Patient Voice video to Twitter (@Pulchritude81), she continues to be a rockstar when it comes to sharing her experiences and advocating for patient centered research. Her latest efforts focused on patient empowerment where she headlined a webinar with our friends at… Continue reading Taking control: from PatientsLikeMe member Letitia and our friends at the Partnership to Improve Patient Care
Epilepsy “Rescue Medication” Survey results are in
PatientsLikeMe recently partnered with Acorda® Therapeutics to research how epilepsy patients respond to seizures using rescue medications, and we’re happy to announce that the results are in. Rescue meds are a type of medication used once a seizure starts to help end it faster or prevent further seizures. Has there been any 24-hour period in… Continue reading Epilepsy “Rescue Medication” Survey results are in
Canine Caretakers: How Service Dogs Can Help Many Types of Patients
Now that PatientsLikeMe is open to any patient with any condition, we’ve noticed more patients with different conditions sharing similar lifestyle modifications. One example is the use of a service dog. What are the benefits – both expected and unexpected – of a four-legged assistant? We asked some of our members to talk about their… Continue reading Canine Caretakers: How Service Dogs Can Help Many Types of Patients
News Release: Survey Reveals PatientsLikeMe® Helps People With Epilepsy Improve Seizure Understanding and Medication Adherence
In today’s news… ******** BRUSSELS, BELGIUM and CAMBRIDGE, MA–(Marketwire – April 12, 2011) – In a survey amongst people with epilepsy in the U.S. who have joined PatientsLikeMe®, the leading health data-sharing website for patients, respondents indicate that better seizure understanding and improved adherence are key benefits of using the site. The majority of respondents… Continue reading News Release: Survey Reveals PatientsLikeMe® Helps People With Epilepsy Improve Seizure Understanding and Medication Adherence