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PatientsLikeMe Out of the Office: Priya Raja talks about cervical cancer awareness

Hi there everyone, my name is Priya and I work as a research assistant on the Health Data Integrity Team at PatientsLikeMe!  Given that it’s cervical cancer awareness month, I wanted to share with you all a global perspective on why screening can be so important. While a Pap smear is something that most women receive during routine visits to the gynecologist, this screening test is unfortunately out of reach for many women around the world. The consequence? Women can show up at the clinic with cervical cancer that has spread throughout their body. And in countries that are resource-strapped for treatments like chemotherapy and radiation therapy, the outlook for these women is, sadly, often very grim. The quandary, however, is that a Pap smear is a very low-cost test that can detect cancer up to ten years before it happens. Even more, being screened just once can reduce the likelihood of having cancer 70% to 80%, and early detection can guarantee nearly a 100% chance for a cure.1       As a passionate advocate for women’s health and disparities in cancer care, I was inspired to spend three and a half months speaking with low-income women diagnosed with …

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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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Can patients become innovators? Rishi Bhalerao from PatientsLikeMe speaks at TEDx Springfield 2013

Rishi Bhalerao, our Program Director of Client Services, recently spoke about patient innovation at the 2013 TEDx conference in Springfield, MA. Rishi talked about how the path to innovation begins right with patients because they are the ones who live with a condition day-in and day-out. Their sharing helps bridge the gap from patient to doctor to provider, and through measuring their own progress, patients can learn from each other and improve their lives together.

Improving drug safety through the patient voice

At PatientsLikeMe we’re interested in bringing the voice of our patients to the attention of those who make drug products and to the regulators that approve them. Since 2008 we have conducted a series of projects to collect safety information from some of our member communities. We’ve worked with our pharmaceutical partners to help them better understand the safety experiences of patients while they are using certain drug products. I’d like to introduce you to a new acronym – P.R.O.S.P.E.R.  It stands for Patient-Reported Outcomes in Safety Event Reporting and it promotes the value of including patient experiences in monitoring the safety of drug products during clinical trials and after drugs are approved. The PROSPER Consortium is co-led and supported by PatientsLikeMe and Pope Woodhead, a UK healthcare firm, with input from most global pharmaceutical companies, many clinical and academic groups, as well as regulators, researchers and patient advocates. A report from the Consortium was recently published in the journal Drug Safety that provides guidance for using patient reported outcomes (PROs) for safety monitoring processes. These are just a few of the reports findings… The patient perspective is an essential component of drug safety Patient-centeredness and patient safety are emerging …

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Uncovering psoriasis with patients like you

This is it, the last report in our 5-part series of seasonal surveys focused on uncovering the experiences our psoriasis members. Like the seasons before it, this summer more than 300 psoriasis community members added their voices to research to help everyone understand what it’s like to live with the condition. Thanks to everyone who shared their experiences and helped uncover a little more. Here’s a sneak peek: Summer facts What do we know about those who took part this summer? The average age of those who answered this survey was 48, and 70 percent of respondents were women. These people also told us about what activities they prefer. A majority of members enjoy swimming in the summer, and out of the swimmers, more preferred the pool (39%) than the ocean (35%). And when it came to clothing choices, we learned that the majority of you (70%) are actually fine with ‘uncovering’ a little skin, choosing to wear T-shirts and shorts versus long sleeves and pants. You can check out the full results by downloading this report — Patient Voice: Uncovering Psoriasis (Summer 2013). You’ll find in-depth look at how our members with psoriasis rated their “skinpact1” this summer along with …

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Trying to put insomnia to rest – An interview on sleep with insomnia patient and PatientsLikeMe member Marcia

As part of our “Are You Sleeping?” initiative, we’re talking with different patients to learn what it’s like to live with a lack of sleep and how that impacts their health. Recently, we caught up with Marcia, a PatientsLikeMe MS community member (some of you might know her as gamma) and happy grandmother of 3 who has had her fair share of experience with insomnia. Marcia talked about her initial diagnosis, her treatment with Zolpidem and general advice regarding insomnia – scroll down to see what Marcia had to say!   When did you first start experiencing symptoms of insomnia? Were you ever officially diagnosed? It has been a while, I think it was early in 2009, so I would have been 49 years old. The problem began with a feeling of bugs crawling all over my skin, and the resulting itch was insane and kept me awake. I did eventually get the itchy bugs under control but the inability to sleep persisted. My primary care provider diagnosed insomnia and prescribed a sleep aid. I noticed on your health profile that you have been taking Zolpidem since March 2009. How often do you use a prescription drug to treat your insomnia? Has it …

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“I do not want your pity. I just want understanding.” An interview with alkaptonuria patient and PatientsLikeMe member Carolyn

Do you know what alkaptonuria (AKU) is? If you don’t, you’re not alone. AKU is a rare but devastating condition that causes severe, early onset osteoarthritis. It also causes cardiovascular problems, such as heart disease, kidney, bladder and prostate stones and other serious health complications. AKU is so rare that it’s estimated to only affect about 100 people in the UK[1]. To help shine a spotlight and raise awareness, we’re talking with patients who have AKU and want to share their story with the community. Say hello to Carolyn. She was diagnosed with AKU when she was only two years old. Carolyn recently took some time to talk with us about getting diagnosed, the daily challenges she faces and how connecting with others has affected her life. Check out what she has to share. Can you tell us when you were diagnosed with AKU and a little bit about the process of finding a diagnosis? Fortunately, I was diagnosed when I was about 2 years old. It was by chance in a way. My aunt noticed that my nappies were brown and mentioned it to my parents. On a visit to the pediatrician whilst my regular doctor was away and …

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One for All: A Building of Hope

As you know, we like to just check in with our members to see how you’re doing as a person, not just a patient.  Today, we have a very special interview with one of our earliest members with ALS, SmoothS.  We sat down with SmoothS to talk about his recent building of the first ever ALS rehabilitation center – the Leonard Florence Center for Living, (LFCL) – which opened in November of 2010.  Along with the interview, below is a video of the grand opening event. Have a good weekend! * * * (Amy) Steve this rehab center rocks! Can you tell me what inspired you to start this project? (SmoothS) That easy; it is the horrible conditions in which a vented pALS is forced to live if you have no option to stay home. After my diagnosis, I was doing some research on my residential options when my care became more than my mother could handle alone. What I found was not pretty. There was nothing except for run-down nursing homes and chronic hospitals. I was discussing the problem with my friend Ron Miller and we tossed around the idea of a pALS residential co-op. I was at an …

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Gambling in online PD patients higher than previously reported

When most people think of Parkinson’s disease (PD), they think of a shuffling gait, a shaky hand, and slowness of movement. As awareness has increased of the non-movement symptoms of PD, such as hallucinations and depression, we’ve seen the psychological consequences the disease can have too. More recently, studies in the scientific literature have been reporting on cases of excessive gambling in patients with PD, sometimes associated with the use of dopamine-agonist drugs such as pramipexole (brand name: Mirapex). In the Parkinson’s disease community on PatientsLikeMe, we came across several accounts from distressed members who had suddenly acquired a significant gambling problem. One member wrote: “I am spending a lot of money that i should not spend.  I wake up thinking about the lottery, I daily purchase lottery tickets, scratch offs, and often wish that I could get on the bus to go to the casinos… Help me before I spend all of our little savings.” We set out to investigate further, setting up a research collaboration with Dr. Graeme MacPhee of the Parkinsons Disease Non-Motor Group (PDNMG) and Southern General Hospital (Glasgow, Scotland), who has carried out studies in this area in the past. Although previous studies had associated …

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Share On: Parkinson’s Awareness Month and PatientsLikeMe PD Community Anniversary

Did you know this April is both Parkinson’s Awareness Month and the 2-year anniversary of the PatientsLikeMe Parkinson’s community?  We invite you to celebrate with us all month as we share real-world patient insights and experiences of living with this disease…and we ask you to share on! The PatientsLikeMe Parkinson’s community has come a long way since it launched in April 2007 – topping more than 3,400 patient members in just 24 months.  Our community members share so much about themselves on a daily basis – from details about how they manage their condition to their personal experiences and stories.  Why share?  Simply stated, to learn more about themselves while helping others better understand this condition.   In the spirit of awareness and sharing, this month we’ll share with you some of what we’ve learned so far from these inspirational individuals and keep it real with some personal patient stories about living with PD. Additionally, later this month, PatientsLikeMe is once again sponsoring the Parkinson’s Unity Walk (www.unitywalk.org), “the largest single-day fundraising event for the Parkinson’s community.”  The event, which brings together thousands of people touched by Parkinson’s, takes place every spring in New York City’s Central Park.  PatientsLikeMe members from …

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