37 posts tagged “sharing”

#NotAlone Recap: On PatientsLikeMe, no one is alone…

Posted October 16th, 2015 by

As our #NotAlone campaign wraps up, we hope you’ve been encouraged by the thoughts and personal stories of how other members have felt less alone by learning, connecting and tracking on the site.

We recently had a look at all the member posts in the #NotAlone forum and wanted to share some highlights with you!

 “I feel less alone coming here; it also helps me keep track of things in a way I never could before … It helps to know others truly understand, as someone who hasn’t ‘walked in our shoes’ cannot fully understand.” – member living with MS

“…we all belong to a group where we have many similar experiences, where physical chronic pain seems to be one of the overwhelmingly major characteristics of what we all experience. That bonds us together as nothing else can. It does make me feel like I’m not alone, that none of us are alone as long as we have each other.” – member living with Fibromyalgia

“I have learned more here than I ever imagined possible and I have made friends. Good quality friends that really understand. I have shared with them and they have shared with me … I have learned there is power in numbers.”  – member living with MS

You can always revisit the #NotAlone forum threads to see more of what people said, and keep sharing your own stories whether in the forums or on your profile. Remember, you can help someone just like you see they’re #NotAlone every time you reach out to others and share your own real-world experiences.

#NotAlone, together.

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#NotAlone: On PatientsLikeMe, no one is alone

Posted September 14th, 2015 by

Our co-founder Jamie Heywood calls it “the big idea my brother inspired.” A community of people learning from each other’s shared health experiences, connecting with people who get what they’re going through, and tracking their journeys to inform new research and help others understand what might work best for them. That is PatientsLikeMe, and that is what Stephen Heywood inspired.

Today, more than 350,000 members are part of the community, and through learning, connecting and tracking, they are #NotAlone.

Over the next few weeks, we’re launching the #NotAlone campaign that’s all about how members continue to learn from and support one another through life-changing conditions.

What can you expect to see from #NotAlone?
We’ll be featuring some inspirational stories to show how members have felt less alone on their journeys. Here’s a preview into the #NotAlone experiences of Letitia, Nola, and Geof:

  • After Letitia learned about an epileptologist on the site and discovered she was a perfect candidate for surgery, she’s been seizure free for 3 years.
  • When Nola’s multiple sclerosis kept her from accessing her shower, Gary, a member she connected with in the forum, stepped in to help from 3,000 miles away.
  • Geof uses Adderall to combat multiple sclerosis fatigue, but, three days before his prescription was up, his insurance company denied the claim. He turned to the community and everyone who had tracked their own experiences with Adderall.

How can you get involved?
Share your own #NotAlone stories – whether in learning, connecting or tracking. Visit the forum to chat about your experience or chime in on Facebook or Twitter using #NotAlone.

And don’t forget to continue adding your data and experiences on the site. Every piece of information can help change medicine for the better and show someone else that they are #NotAlone.

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Caregivers and companions – PatientsLikeMe members talk about their service animals

Posted August 10th, 2015 by

Service animals are often a topic of conversation in the PatientsLikeMe community, and many members frequently share their experiences with their furry friends. For example, Ted wrote about his service dog Catti-Brie in his blog interview.

Here’s what other members are sharing about their animals:

“Just last night when I was having a rough dream [my dog] stood with his paws front paws on the bed and barked till I picked him up and he laid across me and snuggled me to sleep again.”

“I have a mobility service dog that helps with my balance. It’s like having a smart cane. When we go for walks she wears her mobility harness, but when we are home she only wears it when I’m having a bad day. She is also trained to do many other things like get items for me, and pick up things I dropped. She can also turn on/off the lights and open/close doors.”

“Mali is my mobility and medical alert service dog. She has saved my life twice so far… as well as told two of my friends when they had tumors. She went through a spell when she was younger when she thought she had to tell everyone who was ill where their boo boos were.”

Previously, members shared their experiences with service animals in a Canine Caretakers blog post, and others contributed to forum posts on the same topic. If you would like to share about your service animal, head to PatientsLikeMe. Don’t forget to share a cute picture of your pooch (or other animal)!

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Results From PatientsLikeMe Survey Highlight Patient Beliefs About Medical Marijuana

Posted July 14th, 2015 by

Cambridge, MA, July 14, 2015—A new survey of 219 PatientsLikeMe members has found that patients with certain conditions who use medical marijuana believe it is the best available treatment for them, with fewer side effects than other options and few risks. The survey, conducted in June 2015, is among the first to gauge patient perceptions about the benefits and risks of medical marijuana and their level of willingness to recommend its use.

PatientsLikeMe’s Vice President for Advocacy, Policy, and Patient Safety, Sally Okun, RN said that while the number of respondents and conditions represented is limited, the survey and its results come at an important time. “As more people consider using medical marijuana, and more states legalize it, patients need to know what others are experiencing. This survey starts to gather real world data about marijuana as medicine—information that may be useful for patients and their physicians as they explore options and make treatment decisions.”

Half of the survey respondents started using medical marijuana in the last five years, while 25% started to do so in the last two years. Smoking (71%), edibles (55%), and vaporizing (49%) were the most commonly used methods for taking the treatment. The top three conditions represented were multiple sclerosis, fibromyalgia and depression. Key findings are as follows:

Usage and Perceived Side Effects

  • About three quarters (74%) of survey respondents agree that medical marijuana is the best treatment available for their health issue. Another 20% are unsure if there is another option available.
  • 76% report that they use medical marijuana because other treatments weren’t working and/or caused too many side effects. About 21% use it to avoid the side effects of other treatments.
  • When asked about the severity of side effects from using marijuana, 86% of PatientsLikeMe members who report using marijuana indicate the side effects are either “none” or “mild.” The same group says those side effects include dry mouth, increased appetite, and sleepiness.

Perceived Benefits and Risks

  • Survey respondents use medical marijuana for more than one reason, including to treat pain (75%), muscle stiffness or spasms (69%), insomnia (67%) and anxiety (55%). The majority (63%) considered marijuana as a treatment option because they think it is more natural.
  • Most (93%) say that they would recommend medical marijuana to another patient.
  • About 61% say their healthcare provider is supportive of their medical marijuana use, and 60% have a letter of recommendation or prescription.
  • Most patients report a low level of concern (“Not at all” or “A little”) with long-term health risks, such as developing lung cancer (89%), long-term lung damage (86%), or becoming addicted/dependent (96%).
  • One in four patients (26%) report being “Somewhat” or “Very” concerned with legal problems.

Infographics on these and other survey results and the complete list of questions and responses are available at http://news.patientslikeme.com.

David Casarett, M.D., a professor at the University of Pennsylvania’s Perelman School of Medicine and the author of the newly-released book STONED: A Doctor’s Case For Medical Marijuana, worked with PatientsLikeMe on the survey. “This is an important first step in crowdsourced science about medical marijuana. Until we have a lot more large, high-quality clinical trials, patients will need to rely on each other to learn about whether and how medical marijuana might help them.”

Medical marijuana refers to the use of the cannabis plant as well as synthetic THC and cannabinoids as medicine. It is legal in Canada, Belgium, Australia, the Netherlands, the United Kingdom, Spain, and in some U.S. states.

Survey Methodology
Between May 26 and June 10, 2015, PatientsLikeMe invited 1,288 members who added medical marijuana to their profile to respond to the survey; 219 completed it. The mean age of the respondents was 49 years (SD: 12.2); the age range was 19 – 84 years. Most respondents (81%) reported their location as the United States, while 13% are from Canada and the rest are from Australia, Europe, South Africa or Israel. Four respondents did not report their location.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 350,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


Throwback Thursday: Are you sleeping?

Posted July 9th, 2015 by

It’s time for another Throwback Thursday, and today, we’re rewinding back to the summer of 2013, when the staff at PatientsLikeMe shared about how they sleep. Sixty one employees helped kick off the “Are you sleeping?” campaign in a quick poll, answering questions about how long and how well they sleep each night. Check out the highlights below:

How well are you sleeping?
All in all, we found that the majority (89%) of our staffers were sleeping OK or better.

How well are you sleeping?

 

On average, how much sleep do you get every night?
Although our Zzzz’s were OK, 61% of respondents were only getting between 5-7 hours a night (and according the Center for Disease Control and Prevention, that’s way less than the recommended 7-8 hours for adults).

How many hours?

 

Do you have a problem…
For those who confessed to having sleep troubles, more people said it’s staying asleep that was the issue (77%).

sleep problems

 

What have you tried to help you fall asleep?
When it came to needing sleep aids to catch Zzzz’s, more of our employees turned to solutions like books (60%), lifestyle changes (50%), TV (31%), relaxation (31%) and sex (33%). Some tried over-the-counter interventions (22%), prescriptions (16%) and homeopathic techniques (14%). We also asked what was least helpful, and found ‘watching TV’ topped that list.

Tried to fall asleep

 

Since joining the PatientsLikeMe team, do you…
And last but not least, since joining the PatientsLikeMe team, only a handful had changes in their sleep, with 13 people saying they slept less (23%), and surprisingly, 5 (8%) actually slept more.

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If you’ve been struggling with sleep, read what PatientsLikeMe members Lori (living with idiopathic pulmonary fibrosis) and Marcia (living with multiple sclerosis) had to say about their insomnia. And don’t forget to reach out to the community in the Sleep Issues forum on PatientsLikeMe – over 40,000 members are sharing about everything related to their sleep.

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Recapping with our Team of Advisors!

Posted June 19th, 2015 by

Many of you will remember meeting our inaugural Team of Advisors from when we first shared about this exciting team last year! This group of 14 were selected from over 500 applicants in the community and have been incredible in their dedication and desire to bring the patient voice directly to PatientsLikeMe. As the team is wrapping up their year-long term as advisors, we wanted to make sure we update the community on all the hard work they’ve done on your behalf!

First Ever In-Person Patient Summit in Cambridge
Your team of patient advisors travelled from all over the country to join us for 2 days here in Cambridge. They met with PatientsLikeMe staff, got a tour of the offices and began their collaboration together as a team!

Blog Series
The advisors have also been connecting with the broader community as part of an ongoing series here on the blog! This is an impressive group and we hope you’ll read through to learn more about the team.  Some of the interviews featured so far include profiles on BeckyLisaDanaEmilieKarla, Deb, AmySteve, Charles, Letitia and Kitty. If you haven’t had the chance to read their stories and what they’re passionate about yet, feel free to check these out!

Best Practices Guide for Researchers
As part of their mission, this group discussed how to make research more patient-centric and ways that researchers can learn to better engage with patients as partners. Out of this work, the team developed and published the ‘Best Practices Guide for Researchers’, a comprehensive written guide outlining steps for how researchers can meaningfully engage patients throughout the research process. You can hear more about the whole process in this exciting video from some members of the team as they discuss their experiences with the creation of this guide:

Community Champions
The advisors have been wonderful community champions throughout the year, providing invaluable feedback about what it’s like to be a person living with chronic conditions and managing their health. This team has weighed in on new research initiatives, served as patient liaisons and been vocal representatives for you and your communities here on PatientsLikeMe. Whether it was sitting down with a research team to give their thoughts on new projects, discussing their experiences with clinical trials, giving feedback about medical record keeping or opening up about patient empowerment – this group has been tireless in representing the patient voice and PatientsLikeMe community!

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Getting to know our Team of Advisors – Kitty

Posted June 18th, 2015 by

Kitty represents the mental health community on the PatientsLikeMe Team of Advisors, and she’s always ready to extend a helping hand. She’s a social worker who specializes in working with children in foster care, and below, she shares how her own journey with major depressive disorder (MDD) has helped her truly connect with and understand the needs of both her patients and others.

About Kitty (aka jackdzone):
Kitty has a master’s degree in marriage, family and child therapy and has worked extensively with abused, neglected and abandoned children in foster care as a social worker. She joined PatientsLikeMe and was thrilled to find people with the same condition who truly understand what she’s going through. She lost her job as a result of her MDD, which was a difficult time for her. Kitty is very attuned to the barriers those with mental health conditions might face, and has great perspective about how to be precise with language to help people feel safe and not trigger any bad feelings. Kitty is passionate about research being conducted with the patient’s well-being at the forefront, and believes patient centeredness means talking with patients from the very beginning by conducting patient surveys and finding out what patients’ unmet needs are.

Kitty on patient centeredness:
“To me, it means that it’s all about the patient from start to finish. In the beginning, it’s talking with patients, conducting patient surveys and reading any written material that would be helpful in order to find out what patients are most wanting and needing and not getting. In healthcare, this would translate to a doctor engaging with a patient in a way that is especially helpful for the patient. This may require asking a question a certain way in order for the patient to answer truthfully and to feel that their doctor really cares about them as a person. (I was fortunate enough to have had one primary doctor like this for many years and it makes a huge difference!) It puts the focus on that particular patient at that moment and requires empathy and understanding (and not just going through the motions) in determining what is best for that patient.

In the area of research, the same is true. Research of this kind is done to improve the client’s physical and/or mental life in some way. Any research should be done with the patient’s well being at the forefront. Questions should be asked in a way that will lead the client to be very open about their experiences. The client should be fully informed regarding any research in which they participate and be asked at the end if there is anything that has not been covered that they have questions about. They should be informed of the results of the research afterwards and perhaps be allowed to give their thoughts about the findings.”

Kitty on being part of the Team of Advisors:
“A year ago, when I read that PatientsLikeMe was putting together a Team of Advisors, I didn’t hesitate to apply. I wanted to be part of something that had helped me a great deal during a part of my life when I was the most depressed and struggling. When I was eventually chosen to be on the team, I was and have continued to be very honored. I feel such a strong affiliation with PatientsLikeMe and want to be able to help others in anyway that I can. During this past year, I’ve been able to participate in helping to compose a patients’ rights handbook and be interviewed by a researcher regarding how patients view clinical trials. Being on the Team of Advisors has given me the chance to become an advocate for myself and others. It is something that means a lot to me and something that I enjoy doing–and I think it’s something I will continue to do in whatever capacity I can throughout my life.”

Kitty on helping others:
“From the very first day that I joined PatientsLikeMe several years ago, the website has meant a great deal to me. Most of the people in my life did not really understand what I was going through. At times, they thought I really could have done more, but that I was just being lazy. When you are suffering from MDD, this viewpoint from others only increases your depression. I didn’t know where to turn. What I found on PatientsLikeMe were others who were also suffering from MDD and were experiencing the same symptoms and challenges as myself. As I began posting on the site about what I was going through and how depressed I was feeling, I felt somewhat better just by being able to express myself and even more so when others with MDD began reaching out to me with advice and encouragement. I can really say that this made all the difference to me in the world.

After awhile, I made it a point to also reach out to encourage others. I noticed that some people seemed to be very depressed on a daily basis with very little hope and I felt I had to reach out to them in some way. I began responding to their posts. A lot of times I just said that I was sorry that they were feeling bad, as I didn’t know what else to say. I hoped that just this much would encourage them. I didn’t want to be overly upbeat if that wasn’t how they seemed to be feeling, because I felt this was a disservice to them. I felt that the more I could just be there for them right where they were and with how they were feeling the more I could be of help.”

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Getting to know our Team of Advisors – Letitia

Posted June 12th, 2015 by

You might recognize Letitia from her Patient Voice video and her PIPC guest blog, but did you know she’s also a member of the PatientsLikeMe Team of Advisors? Below, read what she had to say about living with epilepsy, her views on patient centeredness and all of her advocacy work.

About Letitia (aka Letitia81):
Letitia is a Licensed Mental Health Counselor in Florida and a National Certified Counselor specializing in mental health and marriage and family issues, who was diagnosed with epilepsy at a young age. Letitia consulted with doctors across different disciplines both nationally and internationally and did not find an effective treatment until she found out about epileptologists on PatientsLikeMe. Through consultations, she realized she was a good candidate for brain surgery and she underwent left temporal lobectomy August 16, 2012 and has been seizure free ever since. She successfully weaned herself off of Keppra this month under her doctor’s supervision.

Letitia is very passionate about giving back to others, and recently met a young epileptic girl and inspired her to undergo the same life changing surgery, and so far she’s met with great results. In addition to helping the young girl and her family, people contact her regularly from all over to consult about their or a loved one’s seizure condition and she’s always willing and delighted to help. Letitia is passionate about research and believes in the power of research to positively change the quality of life (mind, body and spirit), for those living with epilepsy and other chronic conditions.

Letitia on patient centeredness:
“It means that the treatment is individualized based on the patient’s (or research participant’s) unique condition/situation as well as their opinions regarding their health.”

Letitia on the Team of Advisors:
“Being a part of the team of advisors has been an invaluable experience! It has allowed me to work with other “rock star” patient advisors and PatientsLikeMe staff that are just as passionate as I am about changing health care, including research to be more patient-centered for all patients. This experience has also given me exposure that I did not imagine before to share my story, encourage, and inspire patients and caregivers. Additionally, I have been able to network with professionals from many disciplines about the value of the patients’ voice! I have heard from many patients and caregivers from different parts of the country and the world! They reached out to me with questions, for guidance, to thank me for sharing my story, and to share their stories with me. I am so humbled that they felt comfortable sharing their stories with me and looked to me as an “expert” for advice. I guess I should not be too surprised by this since I am not only a patient that can relate to their experience, but I am also a professional counselor. I have been blessed with the gift of showing empathy and compassion to others in my career. Finally, this experience, particularly working on the best practice guide for researchers fits nicely into my current professional endeavor of pursuing a Ph.D. in counselor education, with an emphasis on counseling and social change. Social change involves advocacy and creating innovative ways to improve humanity!”

Letitia on advocacy:
“I am very passionate about advocacy work! Advocacy has been a huge focal point in my role as a professional counselor. I am currently a clinical manager for a large mental health and substance abuse agency and I teach and mentor my staff about the importance of advocacy work. Advocacy is one of the many reasons I stay involved as a patient on the PatientsLikeMe website. Additionally, I have been able to partner with other organizations such as Partnership to Improve Patient Care (PIPC) and the US News & World Report to share my story with diverse audiences. Ultimately, these experiences have allowed me to help other patients and caregivers see the value of advocacy in patient-centered health care, and I am so grateful to be a part of this powerful movement!”

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Getting to know our Team of Advisors – Charles

Posted June 8th, 2015 by

We’ll be featuring three Team of Advisors introductions on the blog this month, and first up is Charles, a veteran Army Ranger who is also living with MS. Below, Charles shared about his military background, his thoughts on patient centeredness and how he’s found his second family in the Team of Advisors.

About Charles (aka CharlesD):
Charles has a diverse background. He served three years in the US Army 75th Ranger Regiment parachuting from the back of C-130 and C-141 aircraft. He built audio/video/computer systems for Bloomberg Business News. He worked as an application systems engineer in banking, as a computer engineer at the White House Executive Office of the President (EOP), and as a principal systems engineer for the US Navy Submarine Launched Ballistic Missiles (SLBM) program. He is currently a contractor providing document imaging Subject Matter Expertise (SME) to the IRS. Charles was diagnosed with MS in July of 2013. MS runs in his family on his mother’s Irish side – he has one uncle and two male cousins with MS.

Charles on patient centeredness:
With experience in website design, Charles believes patient centeredness is a lot like user centeredness when designing a web site or a portal: “Information is organized according to the patient (or the user’s) view of the world. Questions that the patient most needs answered are listed front and center. The design is based on addressing the needs of the patients (users). Info is organized cleanly and logically with possible visual impairments, color perception problems, and cognitive issues of patients (users) always in mind. Research should focus on areas that will make the most difference to the patients. Ask them. Survey them. Get to know the ‘voice of the patient’ just like we look to capture the ‘voice of the customer’ in user-centric design.”

Charles’ military background:
“I joined the US Army in 1986. I did basic training and AIT at Fort Jackson, SC. After that I was off to 3 weeks of jump school at Fort Benning, GA. Then I went to the Ranger Indoctrination Program (RIP) again at Benning. I was then assigned to HHC 75th Ranger Regiment.

I spent 3 years with the 75th training for a lot of pretty cool missions. We trained a lot for airfield seizures. Basically parachute onto a foreign airport or airfield, wipe out all resistance, take the tower, and make way for our big planes to land shortly after. We had early generation night vision goggles (NVGs). I drove a Hummer full of Rangers off the back tail ramp of a pitch black C-130 that was still rolling after touchdown while wearing NVGs. They were no help at all inside the plane since they only amplify existing light. If you are pitch black you are still blind. It is a wonder that I did not kill anyone or damage the C-130 that night.

So I joined up right after Grenada and I got out right before Panama. I never saw any combat. These days I volunteer my time with, and financially support, a veterans group called gallantfew (www.gallantfew.org), started by retired Ranger Major Karl Monger.”

Charles on being part of the Team of Advisors:
“Being on the PatientsLikeMe Team of Advisors has been a wonderful privilege and an excellent opportunity for me. As a person with a brain disease, it is not always comfortable talking with others about my illness. When the Team of Advisors first met up together in Boston, I knew that I had found my second family. I was together in a room where every single person there was struggling with one or more diseases, many of which can be fatal. In fact, one of our team members, Brian, died after serving for only a few months. It was such a warm and welcoming environment. All of us were able to speak openly with each other and with PatientsLikeMe staff and we were heard. Each story, no matter how painful, resonated with the whole group.

All of us in the first PatientsLikeMe Team of Advisors shared many of the same goals. We are an extremely diverse group, but we all bonded immediately. What we want is to help conquer the diseases that have caused problems in all of our lives. We want to improve the relationship between researchers and the patient community. We want to help health care providers to better understand the patient perspective. And we want to make the world a better place for the next generation and for all generations to come. PatientsLikeMe embraces those goals and we embrace PatientsLikeMe. Together we are taking on all diseases.”

Charles on healthcare for veterans:
“As a veteran, health care issues are very important to me. I have seen so many veterans return home with wounds to body and mind. Many are shattered and have no idea what to do with themselves next. Some turn to drugs and alcohol, others to fast motorcycles or weapons. Suicide is rampant among newly returned veterans. The VA is woefully underfunded to take on the mission of supporting wounded and traumatized veterans. In the halls of Congress, the VA is seen as a liability, an unfunded mandate. Many veterans are denied the coverage they so desperately need. Many active duty service members are forced out with other than honorable discharges for suffering from PTSD or TBI. This limits the liability of the VA to support the veteran after separation. A good friend of mine who died recently put it this way. He said to me, ‘The military operates on the beer can theory of human resources. Picture a couple of good old boys out for a good time. They go down to the local liquor store and grab a nice cold six pack of beer. They go down to the lake, they each pop the top and they each start chugging a wonderful ice-cold beer. When they get through the first beer, they crush the can and throw it away. They grab another and another until the beers are all gone.’

I didn’t understand how this related to the military. He explained, ‘The brand new ice-cold beer is like a new recruit. The military sucks everything they can out of the person until all that is left is the empty shell. Then they toss that out and go grab another one just like the last one.’

We don’t deserve a health care system that treats returning veterans as empty shells. We can do better, but the current system is clear reflection of the value system at play in Congress. Funding for weapons programs are highly protected. Funding for the people who wielded those weapons systems is not. My answer may seem a bit cynical, but that is how I see the current state of affairs.”

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Getting to know our Team of Advisors – Steve

Posted May 29th, 2015 by

A few weeks ago, Amy shared about living with a rare genetic disease in her Team of Advisors introduction post. Today, it’s Steve’s turn to share about his unique perspective as a scientist who has been diagnosed with ALS. Below, learn about Steve’s experience with ALS research, his views on patient centeredness and what being a part of the Team of Advisors means to him.

About Steve (aka rezidew):
Steve is a professor of Developmental Psychology at the University of North Carolina at Chapel Hill. He was diagnosed with ALS in the fall of 2013 and his symptoms have progressed with increased debilitating weakness in his arms and hands. He was excited to join us as an advisor to lend his expertise on research methodology to the team. He has authored or coauthored an impressive 6 books, 91 peer reviewed publications, and 26 published chapters. When we talked about giving a background on research methods to the team, Steve said ‘I can teach it.’ He is passionate about helping teach others and believes “as a scientist who has been diagnosed with ALS, I regret having this disorder but I am eager to use my unique perspective to promote and possibly conduct relevant research.”

Steve’s view of patient centeredness:
“The obvious perspective is that patients should have some voice in decisions regarding what research should be conducted, what the participants in research should be expected to do, how participants in research should be selected, and how results of research should be communicated.”

Steve on being part of the Team of Advisors:
“Being a member of the Team of Advisors has helped me understand a wide array of perspectives on patient-centered research based on my interaction with fellow patients who have various health problems and who have various levels of knowledge about research. I am impressed with the consensual consolidation that has emerged from the Team’s dialogue about research.”

Steve’s experience with bibrachial ALS and research on ALS:
“A diagnosis of ALS can be associated with several different configurations of symptoms. Some PALS (Patients with ALS) begin with problems in their feet and legs, some begin with difficulty talking and/or swallowing, and some, like me, begin with weakness in their hands and arms. Also, some PALS start relatively young and have other PALS in their family. And, some PALS have dementia. We all lose our ability to breathe eventually and our array of symptoms broadens, but our initial experience can be very different. I am surprised and disappointed that the medical community has not done more to identify our subtypes and to track our progression within our subtype.

Developing a PALS taxonomy would help doctors provide support to PALS that is most relevant to our needs. It would also help us share our experience with fellow patients and learn from each other. An ALS taxonomy would also be extremely relevant for research on treatments. Ongoing research on ALS using rodents with SOD1 mutations may yield an effective treatment someday, but for now PALS would feel more supportive of this research if it used models that reflect the different taxonomies of ALS. We would feel even more supportive if more research allowed us to participate in studies that focus directly on medicines that could help our ongoing progressive terminal illness.”

More about the 2014 Team of Advisors
They’re a group of 14 PatientsLikeMe members who will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.

So where did we find our 2014 Team? We posted an open call for applications in the forums, and were blown away by the response! The Team includes veterans, nurses, social workers, academics and advocates; all living with different conditions.

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Getting to know our Team of Advisors – Amy

Posted May 13th, 2015 by

We’re been introducing the PatientsLikeMe Team of Advisors on the blog over the past 6 months, and today, we’re happy to announce Amy, a member living with a rare genetic disease called Fabry. Below, she shares about the importance of being aware of patients as individuals, and how she’s learned to live (and thrive!) with Fabry.

About Amy (aka meridiansb):
Amy is currently on the Patient Advisory Board for Amicus Therapeutics where she serves as a patient voice for researchers as they work to develop a new drug for Fabry Disease. Amy is a great champion to have in your corner, with a self-reported ‘wicked sense of humor’, and passion for connecting others to the right resources and information. She has experience advocating for others as a medical social worker, and believes in the importance of getting to know a patient population, writing materials that they can relate to, and understanding how managing their condition fits into their life as a whole. Her tip for researchers and healthcare professionals: “Remember, not everyone fits into neat categories. Those that fall outside of what’s typical can be an invaluable resource when researching a particular condition.”

Amy on patient centeredness:
“Patient-centeredness means that above all else, you have an awareness of the patient as a unique human being, because diseases don’t exist on their own, they happen to people. It means not always doing what is easiest for the doctor or researcher, but what is appropriate for the individual. It means being open-minded and adaptable, not everyone fits in a neat little box. It means not treating people like they are stupid just because they don’t have a medical degree. People know their own bodies, and live with their condition day in and day out and if doctors and researchers don’t listen they can miss crucial information that can help many. These days people have access to a lot of information, and they want to be treated like partners in their care not problems to be solved seen only through the filter of illness, and certainly not like a nuisance because they have an opinion about things.”

Amy on the Team of Advisors:
“Being a member of the Team of Advisors at PLM has been an incredible experience. Having had to quit school and work due to illness, I felt at times that everything I had achieved was for nothing and that I had nothing to offer to this world, which was beyond discouraging. Being a part of the Team of Advisors has given me a meaningful way to use my knowledge and experience to help shape the way physicians and researchers interact with patients. The first time I sat in a room with the team and the wonderful people at PLM I felt a sense of hopefulness that it was all happening for a reason. It taught me that even when your path is diverted by something out of your control, you can find a new path; there is good to be found in every circumstance even when you can’t see it right away. I feel lucky to have served on the Team of Advisors with such a diverse and passionate group of people.”

Amy on having a rare disease:
“Having any illness can be confusing and overwhelming, but when 95% of the doctors you see haven’t even heard of your disease, it can be exasperating and daunting. Having a rare genetic disease, Fabry, has presented me with an even greater need to advocate for myself and others with my same condition. I’m lucky enough to have a background working in hospitals as a medical social worker, so I am no stranger to advocacy and I have no problem speaking up; but this isn’t the case for everyone. Upon my mom’s diagnosis, and then my own, I quickly jumped onto message boards and support groups for Fabry, only to find there are many more questions than answers. I am lucky to have access to a geneticist that is familiar with Fabry, but most people don’t. Because our disease is so rare, many people are hundreds of miles from anyone else with Fabry. In person support groups aren’t really an option, so the internet and learning from each other on social media is crucial. I spend a lot of my time gathering questions from other people with Fabry and working them into my appointments, then reporting back to the message boards. Others do the same, and together we find our way to new tools to manage our lives with Fabry, new things to ask our doctor’s about, and new resources to call upon in trying to figure out this disease. In addition, I try to support others in being assertive with their doctors. I think we have been deeply conditioned in our society to respect authority and education, which is not inherently bad, but it can create an obstacle to honest communication with our health care professionals. It can be really intimidating! You try telling a person with 8-12 years of medical education and years of practice experience that you would like to teach them about a medical condition they don’t already know about! Some egos are better equipped than others to handle the learning curve required in having me as a patient. I ask a lot of questions and I expect good information in return. I always come from a respectful place, as I don’t expect every physician to know about Fabry, but I expect them to be open to learning about it. Some are more than willing and some aren’t and I’ve had to “break up” with my fair share of doctors who weren’t willing. But really, if they don’t care to continue growing as a provider, then I don’t really want them as my doctor anyway. So really, you have nothing to lose by setting high standards for your providers. But you have a lot to lose by remaining in the care of a doctor that wants to treat you like everyone else. You are not just like everyone else! You can miss out on valuable information that can seriously affect your care. So speak up, be respectful, but be assertive. And if you don’t feel that your needs are being met, cut your losses and find someone that does. You are the only one that can make those decisions for yourself! And if you need some moral support, just message me!”

More about the 2014 Team of Advisors
They’re a group of 14 PatientsLikeMe members who will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.

So where did we find our 2014 Team? We posted an open call for applications in the forums, and were blown away by the response! The Team includes veterans, nurses, social workers, academics and advocates; all living with different conditions.

Share this post on Twitter and help spread the word for Fabry and rare diseases.


You can make a difference in April

Posted April 3rd, 2015 by

Eight years ago this April, the PatientsLikeMe Parkinson’s disease (PD) community launched, and now, more than 12,500 people are sharing about what it’s like to live with PD. What better way to recognize this awesome community than to participate in Parkinson’s Disease Awareness Month?

Listen to Leslie Chambers, the president and CEO of the American Parkinson’s Disease Association (APDA), explain the facts about PD in the video below:

As she says, 60,000 people worldwide will be diagnosed with PD in 2015 – that averages out to 164 people every day, or one person every nine minutes.

This April, it’s not just about the 12,5,000+ PatientsLikeMe members living with PD, or the 60,000 people who will be diagnosed in 2015 – it’s about everyone who is living and has ever lived with PD, and all their family, friends and colleagues who have been affected.

You can make a difference. The APDA is running a “30 days, 30 ways” campaign all month long, so be sure to check their website daily to learn how to get involved. The Parkinson’s Disease Foundation is also participating in raising awareness, and they’ve created a great toolkit to get you started. And don’t forget to share through the #PDawareness or #Parkinsons hashtags.

If you’ve been diagnosed with PD, join 12,500 others in sharing to live better, together.

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Taking control: from PatientsLikeMe member Letitia and our friends at the Partnership to Improve Patient Care

Posted April 1st, 2015 by

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 the Partnership to Improve Patient Care (PIPC). She followed that up with a post on PIPC’s blog and we wanted share what she had to say. Check it out below.

“My name is Letitia Browne-James, and I have had epilepsy all my life. Until I started to empower myself about my own care I was unsure that I would ever be cured. After my illness continued to get worse and the seizures more violent while I was trying to live life, I decided to look online for possible solutions because my experience with previous doctors continued to be frustrating and led to dead ends.. Finally, after a few months of research , I was equipped to ask the right questions, to demand better treatment, and even undergo a surgery that I originally didn’t even know existed.

At the age of 10, I was formally diagnosed with epilepsy, and I spent my life, through school and at work, suffering from seizures that continued to get worse. Years went by with multiple doctors and consults both nationally and internationally, leaving me frustrated and confused because the seizures were no longer appearing on scans and they continued to get more violent and frequent.

Eventually, I began doing my own research about my medical care and joined an online resource for patients called PatientsLikeMe. I learned that there were other options available, such as a 72 hour EEG that could detect what type of seizures I was having. My involvement with PatientsLikeMe eventually led me to find out about an epileptologist – a doctor specializing in epileptic care. My epileptologist performed tests that led him to accurately diagnose the type of seizures I was having. From there, I learned that I was a candidate for epilepsysurgery that I hadn’t heard about since I was about 10-years-old. . Prior to surgery, I asked many questions and went through a series of tests to make sure that surgery was the right procedure for me. And since my surgery in August 2012, I have been seizure free and I feel better than ever.

My experience with the medical care system and my efforts to be an empowered patient taught me a few things. Empowerment includes continuous collaboration and effort, not only from a medical team, but from us, the patients. If you are not happy with the care you are receiving or you feel like something is not right at any point in the process, it is important to empower yourself to research your treatment options, talk to other patients with the same condition to get ideas of what has worked for them as well as social spport, and speak out when you questions about the care being provided to you. The truth is, each patient is different, and every medical team should work for the individual person – not for the diagnosis. Solutions that work for one subset of patients do not necessarily work for all patients; the best treatment for the average patient is not necessarily the best for you.

Throughout my journey to find a solution for epilepsy, I developed my own passion – helping patients know that they do have a voice when it comes to medical decisions. I serve as a patient research advisor with 13 other patients for PatientsLikeMe. This expereince has allowed me to continue my passion in an environment that prioritizes patient-centeredness and patient empowerment. And the results speak for themselves. When patients are engaged in the decision-making process regarding their care, they experience better health outcomes and lower costs, while also developing trust in their providers.

Shared decision-making in the medical process cannot be ignored as the healthcare industry is making decisions on what treatments we should be able to access. Patients have to understand their options and make an active choice in their care to get the most out of their treatment. Patient preferences should matter to our healthcare team. And if it doesn’t, we should be empowered to find a different health care provider. As I’ve often said when speaking about patient empowerment: your doctor may be the expert in medicine, but only you are the expert on you.”

Visit the PIPC’s website to learn more about patient-centeredness and comparitive effectiveness research.


PatientsLikeMe member Tam builds first-ever ‘by patients, for patients’ health measure on the Open Research Exchange

Posted January 21st, 2015 by

Back in March last year, we shared on the blog about a new grant from the Robert Wood Johnson Foundation that would help support two patient-led projects on our Open Research Exchange (ORE) , a platform that brings patients and researchers together to develop the most effective tools for measuring disease. We were overwhelmed by the response from the community, and we’re excited to share that one of those projects is very close to being completed.

Tam is living with multiple sclerosis (MS), and she’s been a PatientsLikeMe member for more than 4 years. After her diagnosis and experiences with her doctors not “getting” what pain means to her, Tam decided to create a new tool for anyone who might be experiencing chronic pain. Her idea is to build a measure that can help doctors better understand and communicate with patients about pain.

Watch her video above to learn about her journey and listen to her explain her inspiration behind the new ORE project.

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