patient advocacy

#MoreThan multiple sclerosis: Guest blogger Cathy Chester’s journey as a writer, mom, advocate and optimist

As part of our ongoing #MoreThan series, we’re continuing to highlight patients’ stories of all the ways they’re more than their diagnoses. Here, Cathy Chester – blogger, wife, mother and advocate – shares her diagnosis story and how she’s much more than MS. When I was in my 20s I was thrilled to work for a large publishing house in Manhattan. It was an exciting dream job but I was competing against other recent college graduates who were all jockeying for promotions. To meet the challenge, I needed to be quick on my feet and look polished. I arrived early each morning wearing a beautifully tailored business suit and high heels. I could taste that promotion. But fate stepped in when I least expected it. My 2-inch heels gradually became unbearable to walk in and I started to struggle to maintain my balance. I finally lost the battle one day when my right shoe slipped off my foot without notice. The growing numbness in my legs and feet masked the loss of my shoe. It was time to see a doctor. After a CAT Scan, spinal tap and MRI I was diagnosed with Multiple Sclerosis. I am more than my …

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Author, Reiki master, inventor, husband: Guest blogger Karl Robb shares why he’s #MoreThan Parkinson’s disease

Inspired by our new #MoreThan video series, patients have been speaking up about what makes them more than their diagnoses. Below, Karl Robb — blogger, author and advocate — shares his #MoreThan story about living with Parkinson’s disease. My name is Karl Robb. I have been blogging about Parkinson’s disease for over 10 years on my site, www.ASoftVoice.com. I was diagnosed with Parkinson’s when I was 23 years old, but I showed symptoms as early as age 17. On a rare occasion, I would encounter a resting tremor, often triggered due to stress or fatigue (after a tennis match). It took me at least nine doctors and six years for me to receive the diagnosis and to begin the medical treatment to improve and to deal with the revelation of my condition. The progression of my symptoms have been slow and gradual. I am currently 50 years old. Most of my 50 years have been spent learning that I had Parkinson’s disease (PD), how to deal with it, learn from it and to try to keep it from advancing as best as I possibly can.   Parkinson’s disease may have slowed me a little, but I continue to write, work on …

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“I finally feel like there is hope for me to have a life that has purpose.” – Member Robin shares her story living with complex PTSD

Robin (survivinglife) is a PatientsLikeMe member living with complex PTSD. Recently, she shared her story with us, from her childhood to now, delving into the hardships she’s faced and how she continues to find the courage to forge through. Content within this story may be triggering for some readers. Here’s her story… I am a 41 yo female. I’ve never been married. I’ve never dated or had any type of long term relationships – even long term friendships. My mood swings and constant need to be reassured that I am cared about and wanted is too much for people to put up with for more than a couple of years at best, a few months at worst. My faith is very important to me – it is one of the reasons I have been able to be as successful as I have been in my life. I struggle every day with my faith – with believing that I was not an accident and that I have purpose to my life. I live on 6 acres which I enjoy watching the wildlife and listening to the birds. I have 2 dogs – a pit mix and a poodle mix. They are …

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What’s your #MoreThan story? 11 patients – and counting – share theirs in a new video series

You’re more than your than your condition. You’re you – a father, a sister, a Nana, a spouse, a dog Mom, a sports fan, a professional singer, a veteran businessman, a traveler, a devoted friend, a furious yet hopeful fighter. You play countless roles, and patient is just one of them. There’s power in your #MoreThan stories – see for yourself. Eleven members of the PatientsLikeMe Team of Advisors have shared how they’re “#MoreThan” their conditions in a new ongoing video series. Watch this preview featuring just a few patients like you, and stay tuned for more stories coming soon.   You > your condition. And together, we are the answer. Join us in the fight to learn more, and keep sharing your stories. Up for sharing your #MoreThan story on social media? Follow these 3 steps. Remember to use the tags #MoreThan and @PatientsLikeMe. Share this post on Twitter and help spread the word.

“Always know that you are not alone.” Member Debbie shares about life with PTSD

As a “happily married mom of three and grandmother to four,” Debbie works each day to remain active and positive, filling her time with the things she loves, like crocheting, baking and helping others to see there is a light at the end of the tunnel.   “I try very hard each day to stay as active as possible, both physically and emotionally, always trying to manage my bipolar disorder, PTSD, OCD and anxiety disorder. It’s a lifestyle for me, and it works.”   Though she now manages her condition confidently and helps others learn how to do the same, that wasn’t always the case for Debbie. “I am told my PTSD came about from a rough childhood. I grew up in a severely dysfunctional, alcoholic family,” she shared. “I continued the fiasco by marrying an abusive alcoholic. I have also been victim to multiple rapes, molestation and physical abuse, all from people I should have been able to trust.” Eventually, Debbie was referred by her longtime therapist to a rehabilitation center that was looking for peers (peers are past mental health consumers who now help other mental health consumers based on a shared personal experience). “I spoke with the …

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“It gives me a source of hope”: Gloria’s 9+ years of tracking Parkinson’s disease and making connections on PatientsLikeMe

Member Gloria (sunshine221) has been here almost since the start. The Parkinson’s Disease (PD) community on PatientsLikeMe launched in 2007, and Gloria joined in 2008. We recently caught up with her about her early days with PD, how she has used PatientsLikeMe through the years and what she’s up to now. Early days with PD and finding PatientsLikeMe Gloria had been dealing with walking problems for four years, and was initially diagnosed with spinal stenosis. After having surgery for that, she was diagnosed with PD. She had to shift gears, in terms of finding support online. “Another web board that I was using was great for the spinal stenosis but their Parkinson’s section was inactive,” she says.   “I liked PatientsLikeMe’s tracking sections and how it matched with what the doctors were asking.”   Gloria notes that HIPAA laws made it harder for doctors to connect patients with each other, so meeting people with PD online (and in in-person support groups) was key. “PatientsLikeMe lets me share with people of similar age and illness progression, and when I might be feeling discouraged it gives me a source of hope,” she says. Using PatientsLikeMe through the years Early on, Gloria turned …

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It’s Clinical Trials Day, and patients are driving change

Today is Clinical Trials Day – celebrated to bring more attention to public health and also to recognize the contribution of the patients and healthcare professionals who make clinical research possible. At PatientsLikeMe, it’s members who are changing the way clinical trials are designed. Bringing the patient voice to clinical trials has long been part of the PatientsLikeMe mission. Jeremy Gilbert, Vice President, PLM Health and Paul Wicks, Ph.D., Vice President, Innovation, sat down with us last year to talk about the importance of putting patients at the center of drug discovery and development. Check out their Q&A here. Recently, Paul Wicks touched on the purpose behind the latest PatientsLikeMe study on clinical trial design involving the patient perspective, and why organizations need to work on improving their trial process: “As researchers we know that clinical trials are the best tool we have for identifying new, safe, effective treatments. Patients know this, too, and they’re motivated to take part. But what this research tells us is that actually participating in a trial is not a fun experience; about as much fun as dealing with the worst airlines, banks, or utility companies, and we all know how that can be. This …

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Women’s Health Week: Ginny reflects on motherhood and “the perfect storm” of epilepsy and mental health conditions

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 of members report living with epilepsy along with depression and/or anxiety. “I’ve had anxiety from my earliest memories,” she says. In her early 30s, she also began experiencing MDD. She was dealing with a move, very active children, and worsening migraines, pain and other symptoms. “It was the perfect storm,” she says. Read on for more of her story, plus her tips for women dealing with multiple health conditions in their family. My name is Ginny. I had 12 years of misdiagnosis, until I was appropriately diagnosed with epilepsy, psoriatic arthritis, major depression and anxiety. In the middle of dealing with my own health issues, my son was diagnosed with epilepsy. I felt overwhelmed – extreme exhaustion beyond the norm for a mom and wife. When I started Topamax, a seizure medication for my epilepsy, it raised my anxiety and I told my neurologist I …

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“Every morning that I wake up feeling well is a day to celebrate life.” Revisiting member Gloria’s journey

We first met member Gloria (Glow4life) in 2015 when she shared her journey on the PatientsLikeMe blog. She opened up about her experiences from receiving a lung cancer diagnosis (adenocarcinoma), to the sudden loss of her husband and going through several rounds of treatment. Despite it all she never gave up hope, and two years later Gloria still lives by her motto: “Never give up, never give in.” Gloria was recently accepted for treatment with Keytruda, a groundbreaking new immunotherapy drug. Read on to find out more about how treatment with Keytruda is going, what she’s been up to since we last spoke to her and what she’s looking forward to. What have you been doing over the past two years, since we last spoke? From October 2013 to October 2015, I was stable, until a scan revealed that the primary site, right lung, had increased from 3mm to 16 mm, and I had a new growth in the liver. Because it had been so long since my last chemo, Dr. Brown, my oncologist, was able to offer further chemo, this time Carboplatin and Pemetrexed, four treatments every three weeks. My prognosis was 6 to 9 months without treatment, up …

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“My expertise is as a person with Parkinson’s”: Member Lisa brings the patient voice to drug development

Member Lisa (lcs), a Team of Advisors alum who’s living with Parkinson’s disease, has found her advocacy niche: involving patients in drug development. Diagnosed with PD in 2008, Lisa served as a patient thought leader and co-author of a published journal article called “Increasing Patient Involvement in Drug Development.” She worked on the publication along with Maria Lowe, Pharm.D. – a health data and drug information clinical specialist at PatientsLikeMe – and other pharmacists and Ph.D.s. “I hold my co-authors in the highest regard,” Lisa says. “That said, not one of them was a person with an incurable, progressive neurodegenerative disease. My expertise is as a person with Parkinson’s.”   Maria says that having a patient co-author was “crucial” to the publication. “We wanted to look at how drug developers were incorporating patients into drug development activities and recommend some best practices,” Maria says. “How could we possibly do this without ensuring we were representing what matters to patients?” The value of partnering with patients In addition to teaming up on the research paper, Lisa and Maria also both participated in a webcast on April 12 on PDUFA VI and the Patient Voice. PDUFA stands for the Prescription Drug User …

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