interview

What lies ahead – PatientsLikeMe member John shares his journey with ALS

It’s already the second week of ALS Awareness Month, and as promised, we’ve got an interview to share with John (johnpp) – a PatientsLikeMe member that has been living with ALS since his diagnosis in the spring of 2013. John talks about a new sense of urgency that he feels along with his reaction and outlook after being diagnosed with ALS. And as we speak, he’s traveling across the United States with his adorable dog, Molly (that’s her in the picture) to help raise awareness and funds for ALS through his artwork. Learn more about his efforts on the ART 4 ALS website and check out his full interview below.  When did you first start experiencing symptoms of ALS? What was your diagnosis experience like? I first experienced ALS symptoms early in 2012 as I was trying to wind down a career in metropolitan planning. At the time, I was also heading up the recovery group I helped establish in our hometown of Schoharie NY after the devastating floods from Hurricane Irene in August 2013. The flood had put 85% of all homes and 100% of all businesses in town out of commission. I’m proud of the response from the …

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“In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part I

  We just posted that May is Mental Health Month, and so we wanted to help raise awareness by getting the patient perspective out there. PatientsLikeMe member Eleanor (redblack) first experienced bipolar II as a young woman, and she’s been managing her mental health with the help of her family and psychiatrist ever since. She shared about her journey in a three-part interview series, and we’ll be posting one part each month. In this first edition, Steubenville talked about how twinkling Christmas tree lights gave way to thoughts of loneliness, how life in a convent seemed like the right plan, and how she learned to recognize oncoming depression and mania. Read on for her full interview and keep an eye out for part two in June! Navigating the ups and downs of a diagnosis Although I was diagnosed with bipolar II well into adulthood, I feel I experienced it very early in life. On a particularly joyous Christmas Day when I was about twelve, as the dusk fell early on a typical western New York winter afternoon, I stood alone, gazing at the twinkling Christmas tree, and suddenly thought, “This is how it will always be: cold, and dark, and lonely.” …

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A day in the life of Software Engineer Jonathan Slate

Our members share a lot about their unique health journeys and experiences here on the blog. Just recently, Kim spoke about her shock with MS, Betty talked about her frustration finding the right diagnosis, and Lori’s been sharing about life on the lung transplant list. And as part of our ongoing “A day in the life” series, PatientsLikeMe Software Engineer Jonathan Slate shared about his own recent journey after his son Nolan’s hand injury. He walked through the whole experience, from Nolan’s initial accident to how a simple CD with some x-rays on it sparked an ‘ah ha!’ moment for him.   You started working at PatientsLikeMe about 6 months ago – tell us a little bit about what you do. I work as a Software Engineer, developing new site features, fixing issues and working with other engineers to come up with creative solutions to the technical challenges of building and maintaining the PatientsLikeMe site. I’ve also done some work on the PatientsLikeMe Open Research Exchange project. You’ve said you experienced two “eureka” moments at PatientsLikeMe – what happened, exactly? Well, the first was on the PatientsLikeMe forums, where I found out, first hand, just how comforting it can be …

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“Shocked” – Kim talks about life with multiple sclerosis, becoming an advocate and PatientsLikeMeInMotion™

Last week on the blog, we celebrated the 6th year of the PatientsLikeMeInMotion program. And this week, we’re touching base with PatientsLikeMe member Kim (aka “2006”) who we’ve had the honor of sponsoring a bunch of times through PatientsLikeMeInMotion™. After she was diagnosed with multiple sclerosis (MS), Kim was inspired to get involved in advocacy and fundraising events with her now legendary team, Kim’s Cronies. She spoke with us about her diagnosis with relapsing remitting MS, the evolution and growth of her fundraising efforts and just how much the MS community on PatientsLikeMe means to her. You were diagnosed with relapsing-remitting MS in 2006 – what was that experience like? My experience with being diagnosed was probably like everyone else. “Shocked.” My symptoms started with visual changes. I had Lasik surgery done 3 years prior and thought that something was going wrong because of that procedure. I went to the eye doctor and he mentioned optic neuritis, and being in the health care profession, I knew that was usually in relation to multiple sclerosis. Already, my mind started racing thinking all about the negative things related to MS. Within a week, I went to see my MD and had an MRI, …

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The Patient Voice- Parkinson’s member Ed shares his story

  Back in March, we shared some of our infographics and videos on the blog, and as part of our #dataforgood initiative, PatientsLikeMe member Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort. Click above to watch his video, and keep an eye out for more interviews with PatientsLikeMe members talking about what #dataforgood means to them.

“I would just like to understand the ‘why’” – a conversation with PD community member dropsies

Right at the start of April, you might have seen us post on the blog that it’s Parkinson’s (PD) Awareness Month. And to keep Parkinson’s awareness going strong all month long, we’re sharing a recent interview with PatientsLikeMe member Betty – aka dropsies to those in the community. She was diagnosed with Parkinson’s back in 2009, but was experiencing symptoms since way back in 2005. And just at the start of 2014, she was also diagnosed with type 2 diabetes. Check out her interview below where she shares about her frustrating Parkinson’s diagnosis experience, how diabetes might impact her future eating habits and what she means by a family of ‘co-takers.’ Tell us about your initial diagnosis experience with Parkinson’s – on your PatientsLikeMe profile, you mention your symptoms aren’t “textbook” – what are they like? My diagnostic tale has been long, complicated, and oftentimes frustrating, like many PWP experiences, and has yet to come to a medically-agreed upon final conclusion. I don’t care what it’s called. I would just like to understand “why” before I’m actually confined to life in a wheelchair. After two years of thorough investigation, working with my PCP and including cardiac and rheumatology examinations, my …

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“Pay it forward.” Following up with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori

  This is Lori’s third interview on the PatientsLikeMe blog! She’s been sharing her journey with idiopathic pulmonary fibrosis (a rare lung disease) with all of our followers here, along with her real-world health experiences on her PatientsLikeMe profile. Since the last time we caught up with her, Lori has lost 70 lbs., has made the transplant list and is playing what she calls ‘the waiting waltz.’ Check out the entire interview below where she talks about ‘life on the list’ and what inspires her to donate her health data. And don’t forget to check out Lori’s own blog called Reality Gasps. Thank you Lori for continuing to share and inspire! If you missed one of her previous interviews you can find those here.     You share a lot about reaching your weight loss goal (70 lbs! That’s awesome!). Can you describe what exercise means to someone living with IPF? And some of the other ways you achieved your goal? For someone living with IPF, exercise isn’t about pushing yourself to go farther, faster or harder — it’s about endurance. Pulmonary Rehab is always focused on doing whatever you’re doing for as long as you can. That’s because endurance …

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Living with hope – An interview on AKU with Alycia and Nate

We’ve had the pleasure of talking with and featuring many PatientsLikeMe members on the blog over the years, but Nate is the youngest by far. He’s just 5 years old and is living with Alkaptonuria (AKU), a rare metabolic disease, sometimes called Black Bone Disease. Recently, we had the chance to chat with his mom, Alycia, who spoke with us about Nate’s experiences with AKU and her role and philosophy as his caregiver. To get started, what would you like everyone to know about your son? My son is an extremely happy and energetic 5 year old. He has recently started school and loves playing sport. His favourite sports are cricket and Australian Rules Football. He has a younger brother who he loves getting into mischief with. He also has a rare Metabolic disease called Alkaptonuria. However, we have chosen not to tell him about his disease at this stage. Do you remember what the first sign or symptom was? And can you talk a little about the diagnosis process? The only symptoms he had were black urine and dark ear wax. We never really thought much about his dark urine because we only noticed it when he had accidents …

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PatientsLikeMe’s Jamie Heywood Talks with INSEAD Knowledge

“That’s why we built PatientsLikeMe, to lower the cost of discovering new treatments and to measure and understand disease. Together, this community can help reduce the time to determine what works.” –Jamie Heywood While attending the 2012 INSEAD Healthcare Alumni Summit in London last fall, PatientsLikeMe Co-Founder and Chairman Jamie Heywood sat down with INSEAD Knowledge’s Editor-in-Chief Shellie Karabell to discuss PatientsLikeMe’s model and mission.  What role does Jamie see PatientsLikeMe playing in the healthcare system?  Why does he feel we are a social networking site only in the secondary sense?  How does privacy factor in to how we collect and share data?  Find out that and much more in this insightful interview and accompanying article.

My War with Psoriasis: An Interview with British Blogger Simon

Welcome to the latest installment of our “Spotlighted Blogger” series.  Earlier this year, we focused on psoriasis bloggers, including Lissa, Alisha B., Jessica and Joni, and today we’re pleased to add a male perspective to the mix.  PatientsLikeMe member Simon’s witty blog, entitled My Skin and I, discusses his decade-long battle with psoriasis, a chronic autoimmune condition that can cause itching, rashes and plaques.  What has he learned along the way?  Find out that and more in our interview. 1.     Why did you start blogging about psoriasis, and what’s the reaction been? I started blogging as a way to vent my feelings. I don’t really talk about my feelings, even to my family, and found it very hard to explain what was going on in my head and in my life. When I spoke to people about psoriasis, I kept a lot back and, to write it, even if I hadn’t published it, was a release. I decided to make it public partly as I needed my family to understand what I had been going through and also to help raise awareness. The reaction has been positive.  I have been told I made a few people cry and even had other friends suddenly announce they also …

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