patient voice

“I am not a quitter, I never have been” – An interview with lung cancer member Jacquie

For Jacquie (Jacquie1961), a business owner and entrepreneur from New Mexico, 2013 was the worst year of her life – she’d lost two beloved pets to old age and then was diagnosed with lung cancer, which soon turned into colon cancer. After rigorous chemotherapy and the adoption of a new dog, Roman, Jacquie joined PatientsLikeMe this past September and has been sharing her positive, never-back-down attitude with the rest of the community. We took time to connect with her recently and this is what we learned… Tell us a bit about your life. After a long career of juggling my own real estate firm and landscaping company, I decided to obtain my esthetician’s license in 2011. In late 2012, I opened a spa for skincare. It was in 2013, as I was building up my new business, that I got my first diagnosis of lung cancer. What I didn’t know was that I also had cancer in my colon that went unnoticed by the first oncologist I had. I was getting sicker by the day, losing more weight, but no one even did any blood work on me or examined me for five months. I asked about chemo and was …

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Getting “Patients Included” right Part II: Planning a patient-centric event

You may remember Part I of this blog that focused on the experiences of two PatientsLikeMe members who attended the Kidney Health Initiative’s (KHI) workshop, “Understanding patients’ preferences: Stimulating medical device development in kidney disease,” back in August. KHI is a partnership between the U.S. Food and Drug Administration (FDA) and the American Society of Nephrology (ASN). We recently spoke with patient Celeste Lee and Frank Hurst, MD, Medical Officer, Renal Devices Branch with the FDA, about the planning and consideration it took to make this event “Patients Included.” While this was the first patient-centric event KHI has held, they’ve worked to include the patient voice in all aspects of the initiative. Kidney patients and kidney patient organizations are represented on the KHI Board of Directors, and this past year the KHI Board of Directors formed a KHI Patient and Family Partnership Council (PFPC) made up of only patients and their caregivers. The PFPC helps provide strategic guidance on how to engage and include patients, their families and care partners in KHI activities. Celeste has had kidney failure from an autoimmune disease since she was 17. She’s been an advocate for decades and is now focused on patient-centered care. Celeste …

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Getting “Patients Included” right Part I: Two members attend a Kidney Health Initiative workshop

Back in August, the Kidney Health Initiative (KHI), a partnership between the U.S. Food and Drug Administration (FDA) and the American Society of Nephrology (ASN), held a workshop called “Understanding patients’ preferences: Stimulating medical device development in kidney disease.” But this was more than a workshop – it was an event centered around the idea of “Patients Included” – a movement started back in May to involve more patients on the planning committees, stages, and in the audiences of medical conferences. Sally Okun, our Vice President of Advocacy, Policy and Patient Safety spoke at the event and notes how patient-focused the entire workshop was in that “nearly 100 people among the approximately 150 who gathered for the event were patients living with and managing kidney disease every day, many joined by their caregivers.” “The patients were very open in the discussions and direct in their questions. Many talked about their experiences with hemodialysis and how difficult it is to live a normal life when one has to be at the dialysis center three days a week for many hours,” she says. “In contrast to the conventional treatment approach, the newer developments for hemodialysis at home were very interesting, and in …

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The Patient Voice- MS member Jackie shares her story

  When Jackie was diagnosed with multiple sclerosis after a long, exhausting process, she struggled with a fear of the unknown and had no idea what she would be facing. But then she connected with the thousands of MS members on PatientsLikeMe. Jackie shared with the community about how she felt her current medication was making matters worse instead of better, and others responded with how they had the same experience. They told her about a new medication that seemed to be working for some of them. Jackie’s doctor prescribed it after she mentioned what others had shared, and she’s been having good luck with it ever since. Watch the video to see more of her journey.     Share this post on Twitter and help spread #dataforgood. And don’t forget to check out previous #dataforgood member videos.

The Patient Voice: Garth shares his cancer story for 24 Days of Giving

After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school. “In the beginning they never had a deep meaning. They were generally just notes of reminders. ‘I love you’ or ‘Have a good day.’ The notes took on a little different of a meaning after I was diagnosed with cancer. I recognized that I was looking at my legacy.” Garth’s napkins are his personal legacy, but he also has a medical legacy – the health data he donates on PatientsLikeMe. This month, join Garth in 24 Days of Giving, a campaign centered around patients, driving medicine forward and making good things happen, together. Every piece of health data that is shared will contribute towards a $20,000 donation to Make-A-Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children. If you’re already a member, add your data to 24 Days of Giving. If not, join PatientsLikeMe and see how your data can make a difference. Share this post on Twitter and help spread #dataforgood. And don’t forget to check out previous #dataforgood member videos.

The Patient Voice- Epilepsy member Letitia shares her story

    What would you do if you were living with seizures from epilepsy since you were ten years old? And you weren’t even able to drive a car? Letitia turned others living with epilepsy on PatientsLikeMe and shared about her journey in a recent video. Watch above to see her inspiring story, and how she’s helping others through her own experiences and the data she’s donating on PatientsLikeMe.     Share this post on twitter and help spread #dataforgood. And don’t forget to check out previous #dataforgood member videos.

If you could share one thing… -Steven’s inspiring answer

PatientsLikeMe ALS member Steven (sheronemus) was diagnosed with ALS back in 2005, and we recently had the chance to ask a few questions about his experiences. Steven spoke about his initial anger and disbelief, the clarity and focus he developed afterwards and how technology helps him participate in many events he didn’t expect to witness. Read his full interview below. What was the first thing that went through your mind when you were diagnosed with ALS? After the initial shock came a phase of denial and anger. Like many people with ALS, I had seen a number of doctors over a period of two years and had received several diagnoses ranging from a pinched nerve to benign fasciculation syndrome. Feeding the disbelief was my anger at the neurologist who, after performing a minimum of tests, told me I was dying and to come back when I needed a wheelchair. Since he was a jerk he couldn’t be right, right? Soon my wife and I felt a profound loss for our 4 children and for all the milestones we wouldn’t share like graduations, weddings and grandchildren. How did your diagnosis change your everyday life? My diagnosis brought clarity and focus as the …

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Diabetes and stress- What the PatientsLikeMe diabetes community has to say

Here at PatientsLikeMe, we believe that sharing healthcare experiences is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. So, we wanted to share back with everyone some results from a recent diabetes survey that nearly 600 PatientsLikeMe community members took part in. Our members entered their responses to the 17-item Diabetes Distress Scale (DDS), which measures the amount and types of problems diabetes can cause in a person’s life. Have you had an A1C test done in the past year?  Download the PDF  to check out the results summary. Dr. William Polonsky, Founder and President of the Behavioral Diabetes Institute, and the co-creator of the Diabetes Distress Scale, shared his thoughts about diabetes and stress with the PatientsLikeMe community. “I believe it’s important to understand the physical, behavioral and emotional sides of illness. Diabetes, in particular, is so highly dependent on what people do every day.  It is, therefore, almost all about behavior− how do you talk yourself into taking on new tasks and making changes in your lifestyle, some of them which may seem not so pleasant or worthwhile, that you’d rather not do.” If you’re living with type 1 diabetes, or …

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“Does anyone in healthcare want to be understood?” Sally Okun from PatientsLikeMe at TEDMED2013

It’s no secret that here at PatientsLikeMe, we think that the voice of the patient — your voice — is the number one way to drive medical advancements. At TEDMED 2013, our very own Sally Okun shared that message on one of the world’s largest stages. She asked the audience a very simple question. “Does anyone in healthcare want to be understood?” Check out the video to see Sally’s answer.    

Psoriasis in spring: what we’ve learned

Spring has sprung, and for most people that means coming out from winter hibernation, shedding the layers and uncovering their psoriasis. As a part of our regular series, we conducted a survey of the PatientsLikeMe psoriasis community from March through June, receiving responses from over 300 patients. We asked everything from “How do allergies affect your psoriasis?” to “Does your psoriasis impact your spring clothing choices?” What’s your skinpact? The Dermatology Life Quality Index (DLQI) is used to measure the “skinpact” that psoriasis can have on patients. It asks questions like “How self-conscious are you because of your skin”, “How much has psoriasis interfered with your personal activities”, or “Does your skin condition affect your ability to do sports?” The questionnaire runs from a low score of 0 (no impact) to a maximum of 30 (extremely large impact). This season the average skinpact in our spring survey was just below 9. The average for male’s was slightly lower than female’s (8.2 versus 8.8, respectively). To share what we learned, we’ve put together a new Patient Voice report entitled Uncovering Psoriasis. Don’t miss this in-depth look at how our psoriasis patients rated their “skinpact” this spring along with what specific factors can increase it, from age to …

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