16 posts tagged “lupus”

Teaming up with LupusChick to boost chronic condition awareness

Posted April 4th, 2017 by

PatientsLikeMe is excited to announce a new partnership with “LupusChick,” Marisa Zeppieri-Caruana. She’s an influential blogger, advocate and advisor for the lupus and chronic condition community – and an all-around cool gal. Marisa grew up with various health issues and suffered serious injuries in April 2001 when she was run over as a pedestrian by a truck, driven by a drunken driver. During her rehabilitation, she suffered a small stroke and was also diagnosed with lupus (which can be triggered by trauma, like accidents and injuries).

Marisa launched her LupusChick blog in 2008, and it’s now a popular destination for reflections on life with chronic illness, recipes (she’s a juicer and a foodie!), wellness tips and more. She’s been featured in U.S. News & World Report, The Huffington Post, The Mighty, Eating Well, Elle, Glamour, and many other publications as a voice for people with chronic illness. She raised even more awareness of lupus when she reigned as Mrs. New York USA Universal 2015. We recently caught up with her about her experiences with lupus, her award-winning blog and her hopes for this new partnership with PatientsLikeMe.

LupusChick Interview

What inspired you to launch LupusChick? Did you expect it would reach so many people and become your day job? 

Between 2005 to 2008, I met many lupus patients and their family members or spouses through support group and awareness events and was surprised at how many of these men and women still felt alone. I believed they were looking to find a solid connection with other patients. As social media and the internet was really beginning to take off, I created LupusChick as a safe space for patients dealing with any chronic illness. It started from a small blog, reaching a few hundred people a month, to today where it is a nonprofit and major autoimmune community that reaches about 700,000 people per month. I think of it as my day/night/weekend job, as people reach out from all across the globe at all hours. It is everything I hoped it would be and more!

Could you share some of your lupus diagnosis story with us? How did you come to terms with your diagnosis after already going through so much? 

I believe my story really started when I was young, as I had health issues since I was a baby. My symptoms came out full force, though, after being struck by a truck as a pedestrian. Some autoimmune symptoms are exposed through a trigger, and that incident seemed to be my trigger. I had to heal from that event as I had extensive injuries, and got sick on top of it. I can’t say it was my finest hour, but once I got through the frustration phase, I began to see that I was still here for a reason and I needed to transform all the “bad” into something good.

What do you like to do for fun? How has lupus affected these things? 
I love to travel, meet new people and just be spontaneous. Lupus has changed a lot of those things for me but it hasn’t broken my spirit. My travel is much more planned, and I have to strategize time for rest, but it doesn’t stop me from having new adventures in life.

Which lifestyle habits or changes have helped you the most in managing lupus? How do you help others find lifestyle tips and tweaks that might work for them? 

Changes I have made included learning how to say “no” and not overextending myself. At the end of the day, I am no good to anyone else if I have run myself ragged and put myself into a flare-up.

I’ve also made a variety of changes to my diet, as I deal with lupus and many allergy and food allergy issues. These changes have helped me manage some symptoms and have made an improvement in my energy level. I am always happy to share my tips with others, but I also recommend for people to find what works for them, especially when it comes to things like diet. One suggestion I do stress for chronic illness patients is journaling. Keeping track of my symptoms, food, stress, medicines, flares, activity levels and more provided incredible insight over time as to what causes my body to flare up.

Many people on PatientsLikeMe are managing invisible chronic conditions. What is the hardest part about managing a chronic illness that other people can’t see? 

The reality is many of us are almost putting on a show, attempting to seem healthy and “normal” in order not to be judged and critiqued by others who don’t understand our illness. That in itself can be exhausting. I think if some people had a glimpse of what our lives are like on a daily basis – the fatigue, pain, doctor visits, IV treatments, medicines, needing help – they might have a different perspective on chronic illness. It might foster more compassion and, in our community, that would be incredible.

LupusChick Interview

What does a tough day look like for you?

Tough days usually include fevers, pain, rashes, heart issues and severe fatigue. It can definitely get me down because I am a total Type A who has a million things I want to do. My mind never stops, but my body puts the brakes on many of my plans. There is a level of frustration that comes along with that. I try to keep in mind a new day is coming and remind myself that I have accomplished the things I have set my mind to, even if it has taken me longer than expected. That gives me hope for future goals.

What about a great day – what does that look like? 

A great day means a lot of energy, little medicine and no IV treatment. It might look like me, my husband and our rescue dog hiking in upstate New York or kayaking on Lake Ontario. Because so much of my life seems to be me stuck in bed, I love to get outdoors whenever possible!

What are you looking forward to most in this partnership with PatientsLikeMe?  

So many things, such as connecting with like-minded people, educating others about lupus (and various illnesses) and having the incredible resources of PatientsLikeMe at our fingertips to learn what has worked for other patients dealing with similar issues!

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3 energy-saving tips for people with lupus

Posted March 31st, 2017 by

lupus fatigue tips

Fatigue can be a big deal when you have lupus. About 43 percent of PatientsLikeMe members with systemic lupus erythematosus (SLE) who are tracking fatigue as a symptom say that it’s “severe.” A rough day can feel like “walking through knee-deep water,” notes one member.

Here’s a roundup of energy-saving tips from a few different sources (spoiler alert: routines and planning ahead can help):

  1. A PatientsLikeMe member’s advice: schedule, schedule, schedule. “You can’t schedule too much with lupus because one activity can knock you out,” she says. “I learned to say no in advance to over-scheduling social engagements or things that would keep me out too late or keep me from getting enough sleep.” She also sets alarms and reminders on her phone to keep her on track, including one at 9:30 every night that says, “Time to unwind” – put away electronics, take meds and go to bed.
  1. Hint from a writer with lupus: manage your mornings. Heather Glantz, who has been living with lupus for more than 20 years, says it took her several years to nail down a morning routine that preserves energy for the rest of the day.

lupus fatigue tips

“I try to stay in bed as much as possible before I start my day, so my curling iron, mirror, brush and makeup are all in a drawer next to my bed,” she writes. She has a bench in her shower and stays seated on her bed when she gets dressed. She also avoids clothes that need ironing or have lots of buttons, zippers and buckles – every little bit of energy counts.

  1. More scheduling pointers from the experts at the Lupus Foundation of America:  
    • Balance busy times with periods of rest throughout the day, if possible.
    • Prep meals in advance, whenever you have a bit more energy.
    • Plan ahead for big events like the holidays – shop for gifts throughout the year.
    • Establish good sleep patterns. (PatientsLikeMe bonus tip: iPhones have a new “Bedtime” feature that reminds you when it’s time to hit the hay based on how many hours of sleep you’d like to get – pretty cool.)

Is fatigue a symptom you’re living with? Make sure you’re tracking it so you can see how you’re doing over time. Do you have a routine that helps you manage fatigue? Add a comment on what works for you.

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Meet Hetlena from the PatientsLikeMe Team of Advisors

Posted January 31st, 2017 by

Say hello to Hetlena (@TheLupusLiar) from the 2016-2017 Team of Advisors. We recently caught up with Hetlena and she chatted with us about some of the challenges she faces living with lupus and why she won’t let it stop her: “Putting off your aspirations, dreams, and wants due to the fear of what an illness can do means you are standing still.”

Get to know Hetlena and read on to find out how she stays positive: “After living for a while, you begin to realize that you are only given one life, so why not live it to the best of your ability.

What gives you the greatest joy and puts a smile on your face?

What doesn’t give me the greatest joy? Not much. I do my best to find joy and appreciation in everything that I am exposed to because waking up to a new day is one of the greatest joys anyone can experience. I’ve always been a morning person, so the smile comes naturally. After living for a while, you begin to realize that you are only given one life, so why not live it to the best of your ability. (…And yes, I could do much better.)

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Being diagnosed with lupus wasn’t the only problem, adjusting to the shift in what I can do and when I can do it is one of the greatest obstacles of living with this perplexing illness. There are so many days that I live in fear of being exposed of my weaknesses while trying to live up to others’ expectations. Being that I’ve willed myself to hold a full-time job while battling this disease, there are many times I secretly cower to the fact that I may not remember something, I may drop my coffee cup, lose control of my arms, or be out sick when I ‘shouldn’t’ have. I feel that society can handle a common cold, but not forever shifting sick days. Folks will say that they understand, but it’s my experience that many do not. I wish more of us —those diagnosed with lupus — were brave enough to not be coy about the unwilling position that lupus places us in. We are weakened by our feelings, our worries that others just do not understand how someone can be so well, so able at one moment of the day, then not functional the next.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

If I had to describe my condition to someone who isn’t living with it and doesn’t understand what it’s like, I’d have them first reserve a few days, maybe even a week or two, to be away from others. This is how this disease can feel, lonely, secluded, and strangely misunderstood. Lupus is an autoimmune disease in which the body’s immune system attacks normal, healthy cells and tissue. The body attacks itself. Lupus isn’t to the point where every doctor’s office has a brochure to give you when diagnosed. You’re told you have lupus, something not a lot of research has been done about, then you are asked to follow up in six weeks—if you have six weeks. This disease is scary, unpredictable, ridiculously confusing, but, thanks to many developments in the last ten years, better. How much better depends on the body. Since no two lupus patients are alike, my symptoms differ from others diagnosed. I am in constant pain. It’s continuous, yet varies at different times of the day. There are times when I’m overwhelmed with discomfort, confusion, anger, and depression. There are times when it all happens at the same time. These heightened times are known as flares, when the disease takes hold in a way that it cannot be controlled. The medicine usually changes with symptoms, thus the costs of doctor visits and medication is additionally horribly painful to the pocket. In retrospect, to understand the upheaval this disease persists upon in one’s life, you’d have to be diagnosed with it to truly comprehend what it’s like living with lupus.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

During my 23 years of living with this disease, I’ve learned that self-monitoring is the first method of self-care that a person newly diagnosed with a chronic condition needs to practice. You cannot support your own successes without tracking your good days and bad days. Maintaining records on medications, symptoms and even your surroundings and feelings help make for a better you.

How important has it been to you to find other people with your condition who understand what you’re going through?

It is has been vital that I connect with others dealing with the same condition that I have. Because this disease is so complex and multi-faceted, it is helpful to communicate with other people with my condition. Those, like me, know firsthand how difficult managing this disease can be.

Recount a time when you’ve had to advocate for yourself.

For anyone living with a disease that changes almost as much as the weather, advocating for your health is not an easy task. Lupus flares do not always call before they stop by; so you end up visiting the emergency room more than you’d like to.

With this being said, there have often been times that I’ve had to insist on having an emergency room attending physician ‘check’ for certain vitals that they would normally have not taken or reviewed. When you are already weak, distorted, and out of sorts, as a patient, you are not taken seriously or seen as being a ‘complainer.’ This can be hurtful and annoying. This is why I keep a journal of my symptoms and other important medical information such as my current physician’s contact information and latest test results. Being able to quickly access this information and add to it, if necessary, allows me to advocate for my health and insure that I am taken care of in the best way possible, with the most accurate amount of information.

What made you want to join the PatientsLikeMe Team of Advisors?

It wasn’t that I just wanted to join the PatientsLikeMe Team of Advisors, I just HAD to join! There was no way that I would not have wanted to be a part of a team that helps others advocate for themselves in the most sensible and realistic way possible! PatientsLikeMe believes in the patient point of view to healthcare. How about that for an idea? We need our healthcare providers to know that we appreciate them, but we also need them to know the best way to care for us. That means being open, truthful and as informative as possible when it comes to relaying health information. PatientsLikeMe does just that! They give patients, like me, a voice. A voice that’s loud, clear, and monitored all at once. And, as a patient, this not only helps me, but allows my one voice to be an additional advocate for lupus healthcare awareness.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

Everyone needs a safe place of understanding, a nest of relief from feeling anxiety for being misunderstood. Being able to connect with others diagnosed with lupus is comforting. The PatientsLikeMe site provides this place to connect and more. Not only is the helpful health information always relevant and up-to-date, but my very own personal information assists me with my own care. I can look back at my information, target where a flare may have been triggered and get a more than typical perspective on my overall health.

What are you putting off out of fear from your condition?

You have to consider using and appreciating what you already have before you can begin to be happy. You have to do your best to not let the pain, depression, frustration and fear take over your mindset. Meditating and listening to yourself is one of the best ways to clear your mind and re-center. It doesn’t happen overnight, but it can happen. Putting off your aspirations, dreams, and wants due to the fear of what an illness can do means you are standing still. In order to get where you want to go, you have to move. And that means moving past the fear of what could happen into the path of what will happen.

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PatientsLikeMe Welcomes Next Patient Team of Advisors

Posted November 14th, 2016 by

 

CAMBRIDGE, Mass, November 14, 2016PatientsLikeMe has named 11 members to its patients-only 20162017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners.

“Each year, our Team of Advisors has proven an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.”

More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington.

John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and collaborate with PatientsLikeMe and other members of the Team of Advisors. “My experience with PatientsLikeMe has been filled with exploration, information and conversation. My health journey has been positively impacted through my connection with other members, by the various tools for tracking and logging health data, and by opportunities just like this – to participate in an advisory capacity.”

The 2016-2017 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times during the upcoming year. This is the third Team of Advisors the company has formed. The 2015 team focused on redefining patient partnerships and established new ways for the healthcare industry to connect with patients to deliver better care. In 2014, the inaugural group provided feedback to the research team and discussed ways that researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe

PatientsLikeMe 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 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 85 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Katherine Bragg
PatientsLikeMe
kbragg@patientslikeme.com
617.548.1375


Patients as Partners: Cyrena on connecting through social media

Posted June 29th, 2016 by

Earlier this month, Team of Advisors member Cyrena shared how she relies on many of the Partnership Principles in her interactions with her physicians. Today, she offers some insight into a different type of relationship in our health journeys — the ones we have on social media.

In addition to PatientsLikeMe, Cyrena is active on Twitter and Facebook and has used both to connect with other patients who what it’s like to live with bipolar II and lupus. Whether you’re social media-savvy or not, check out how she stays in touch with her virtual community to “exchange advice or just plain empathy” and get involved in patient advocacy.

 

“It’s all about networking”

Many patients live with multiple conditions, but the current nature of illness and treatment forces us to think of our conditions individually. In reality, these conditions interact and influence each other in ways that clinicians may not understand or recognize. Many of these patients end up online and looking for support.

I primarily interact with the chronic illness community on Twitter, but to a lesser extent on Facebook as well. I was an intermittent follower, but I became highly active during my hospitalization for my spinal cord injury in 2014. I didn’t really know any other chronically ill people with either of my conditions, but when I dove into Twitter, I found people with each, both, and so many more. It was exciting to find this virtual community that provided the peer emotional support that I lacked in real life.

The number one form of support that I obtain from interacting with patients online is validation. In physician appointments it is challenging to fit everything that I would like to convey or discuss in 15 to 30 minutes. But when I go online, someone is going through the same thing I am and we can exchange advice or just plain empathy. There is also an extensive patient advocacy community which I have become part of, which gives me the opportunity to not just voice my opinions on how patients are treated in the modern medical system, but also brainstorm with others on how to affect change.

“It was exciting to find this virtual community that provided the peer emotional support that I lacked in real life.”

 

First and foremost, I would recommend that patients interested in partnering with communities in social media recognize that there may be a sizable upfront investment. Twitter is akin to hovering above a massive highway and trying to identify which drivers you want to talk to. You can start by finding the Twitter name of one of the major organizations for your illness(es). Who do they follow? Follow some of those people. Who do they talk to? Follow those people. Start engaging people by sending messages pertaining to a topic of active discussion. Eventually those people start to follow you and your network grows.

Twitter moves very fast, but there are ways to stay engaged and live a normal life. I have a Twitter app on my phone that I check when I’m waiting in line or at the bus stop, and I keep a Twitter tab open in my browser when I’m working so I can pop in and out whenever I need a break from working. I have found the investment to be worth it because I like the rapid turnover of conversation and the opportunity to have a pseudonymous account. Others may prefer using Facebook for forming social media connections. There are thousands of patient groups there. Again, just start by searching for your illness and move from there.

It can seem scary and time consuming, but I’m an introvert and a graduate student. I just needed to find other people out there like me in some way. To quote a phrase I’ve heard endlessly over the past few months, “It’s all about networking!”

 

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Patients as Partners: Cyrena talks empathy and assertiveness

Posted June 6th, 2016 by

We’ve been talking to 2015-2016 Team of Advisors about the Partnership Principles they put together and how they use them in their personal health journeys. Next up is Cyrena, who’s living with bipolar II and lupus and recently completed her PhD in pharmacology. Below, she talks about managing multiple conditions, getting on the same page as her doctors, and the need to be both empathetic and assertive in your relationships with your care teams. Plus, stay tuned for more from Cyrena soon!

 What I’ve learned: Know your needs, make shared decisions

As a graduate student in pharmacology with an interest in mental illness and immunology, I usually find myself in a unique position in the “hot seat.” I don’t view my physicians as all-knowing entities. I am not a physician, but I have a knowledge base, both about disease processes and my own body. What I bring to the table is just as important as what they bring, and therefore I view my interactions as a partnership on mostly equal footing. (After all, I don’t have prescribing privileges!)

Studies at the PhD level require a level of stamina and mental acuity that aren’t always present in patients with lupus and bipolar disorder. When I am with my physicians, I have to express that my needs are likely different than the typical patient. I can’t have medications that dull my thinking or alertness. I have to keep things moving along, so even if I have a flare I may be able to slow down but I can’t completely stop and rest. Once we are on the same page regarding my needs and expectations, we are in a position to make shared decisions that work best for my health and my studies.

Having both a mental and immune illness has been an eye-opening experience. Because psychiatry and mental health is essentially isolated from other areas of medicine, I have had to be the foreman in the factory, making sure that all the parts go together and everything works as it should. I have been diagnosed with bipolar disorder longer than lupus, but in almost every encounter outside the psychiatric setting, it is basically an afterthought. I have to assert its importance in my health and wellbeing and try to bridge the silos. Part of my research involved the effects of the immune system on mental health, so I am intimately aware of the relationship between the two in my case as well as in the scientific literature. Fortunately, I have a psychiatrist who is well versed in the relationship between mental illness and physical chronic illness, so I am not completely alone in my struggle.

“Clinical folks are people, too. I am an empathetic and assertive patient, and I am sure that has eased my relationships with clinicians throughout my illness experience.”

 

For those who shoulder multiple illnesses and significant career expectations, it is critical for the patient-clinician partnership be clear on how treatment will impact those expectations, and that what is “most important” can change at any point. At the same time, recognition of the new or ongoing limitations of illness and perhaps being willing to reevaluate the history of illness and treatment plan, even if it may result in career setbacks.

Partnering four ways: Advice from one patient to another

First and foremost, know who you are and what you want. The clinical environment can be intimidating, and when you’re sitting in the patient’s seat, your mind can completely blank out and you find yourself going along with whatever they tell you to do.

Secondly, know who they are and what they want. Clinicians have goals as well, and if you are managing multiple conditions, those goals may be in conflict with one another. Be prepared to advocate for yourself in the event of pushback, but also acknowledge and appreciate when their goals align with yours.

Third, stick up for yourself. If you don’t like something, whether it’s a treatment plan or the clinician themselves, be willing to say “no.” I have no problem walking away from a clinical environment that does not suit my needs or will not work with me. I recognize that others may be limited in their choices by geography or insurance plans, but voting with your feet can send a message that comments or complaints may not.

Fourth, recognize the limitations of your clinicians and the medical system. Your appointments aren’t 15 minutes because that’s what the physician wants. They hate it too! There are forces outside the patient-physician relationship that are invisible to the patient but omnipresent in the office visit. My mother is a nurse, my research advisor was an MD, and I spent a little time in medical school. I am aware of the pressures on the other side and try to give most clinicians the benefit of the doubt. A little empathy goes a long way. It may not seem like it, but clinical folks are people, too. I am an empathetic and assertive patient, and I am sure that has eased my relationships with clinicians throughout my illness experience.

 

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Meet Cyrena from the PatientsLikeMe Team of Advisors

Posted February 24th, 2016 by

 

Say hello to Cyrena, another member of your 2015-2016 Team of Advisors. Cyrena is living with bipolar II and lupus, and currently a PhD candidate in pharmacology.

Cyrena describes some days with her conditions as “swimming through a vat of molasses” — which makes managing her intensive student workload along with her health a challenge. She believes there is a lack of resources in higher education to support students with chronic illnesses.

Still, this hasn’t stopped her from taking control of her health. Below, Cyrena shares how she’s tracked her mood on PatientsLikeMe for over seven years, and how she prepares for every doctor visit to make sure all her questions get answered.

What gives you the greatest joy and puts a smile on your face?

Probably a full 24 hours with no obligations other than to play with my two cats, eat whatever I want, and hang out with my partner all day.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

The greatest obstacle that I have faced living with chronic illness has been getting through graduate school successfully (and in one piece!) I believe that making higher education, particularly graduate and professional education, more supportive of students with chronic illness would require that institutions recognize that chronically ill students are willing and capable of completing a challenging degree. Completion, however, requires that colleges and universities be able to provide appropriate medical and psychological support, and if they are unable to do so directly, facilitate access to these resources through disability support offices. Most importantly, chronically ill students need to KNOW that these resources exist and that people around them are confident that they will be able to succeed.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

Waking up everyday and not knowing what that day will feel like. Today I may be able to roll right out of bed and get on with my day, even though it feels like I’m swimming through a vat of molasses. Two weeks from now it could take me four hours to get out of bed, take a shower, and go back to bed again because I simply am too depressed to face the day. But no matter what’s happening, more often than not no one else can see what’s going on. That’s every day living with invisible illnesses.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Become an expert! No one knows more about you than YOU do. But also learn as much about your illness(es) that you can, so that when you communicate with your physicians and other healthcare providers, you have a better chance of understanding what is going on before you leave the office.

How important has it been to you to find other people with your condition who understand what you’re going through?

It has actually been more important to me to find people living with other chronic illnesses than finding people with my specific illnesses. I find that within particular illness communities there is a tendency to fall into a cycle of comparison — both positive and negative — rather than support. In meeting people with other chronic illnesses, I have been able to share general survival tips and identify ways in which the chronic illness experience can be improved for all members of society.

Recount a time when you’ve had to advocate for yourself with your provider, caregiver, insurer, or someone else.

I believe that I advocate for myself whenever I have an interaction with my physicians. I come in with a specific set of questions and concerns and make sure that the appointment doesn’t end until we have at least talked about them. Short of emergency situations, I don’t believe that anything involving my health is a unilateral decision. And I make sure to get copies of anything I ask for, even if they grumble about it.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

It was PatientsLikeMe that introduced me to the concept of tracking my moods online, then other health parameters like medications and quality of life. I now have over seven years of Mood Map data online. It gives me the opportunity to go back through my history and compare external and internal factors between past and current mood events. When I first started using PatientsLikeMe, I was a more active member of the community forums, and found it immensely helpful when I needed somewhere to turn with the aches and pains of everyday life with illness.

What is your favorite type of pet?

Cats, hands down. A cat is introverted and sometimes standoffish, but (s)he’ll be your best friend if you put in a little effort.

 

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PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships

Posted October 19th, 2015 by

Cambridge, MA, October 19, 2015—PatientsLikeMe has named 14 members to its patient-only 20152016 Team of Advisors and challenged them to work through an issue that’s central to everyone in the healthcare system: how to redefine patient partnerships. The team will be focused on rethinking what it means for patients to be partners, and on establishing new ways for the healthcare industry to connect with patients to deliver better care.

PatientsLikeMe CEO Martin Coulter said that in an era when patients must be front and center in healthcare discovery and development, the group’s mission is vital to every patient, pharmaceutical company, regulator, payor and provider. “This advisory team includes some of the strongest patient advocates we have ever met. Their experience can empower other patients, and help those serving patients understand what it means to be a good partner. The team’s work will help create a stronger foundation for a more equal and participatory system of care.

More than 1,400 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. The nearly equal mix of men and women are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), bipolar II, cancer, Type 1 diabetes, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lupus, major depressive disorder (MDD), multiple sclerosis, Parkinson’s disease and post traumatic stress (PTS). Members named to the team include: Christel Aprigliano, Craig Braquet, Jeff Demers, Cyrena Gawuga, David Gewirtz, Phyllis Marchand, John Michael, Gus Prieto, Laura Roix, Patti Sanner, Allison Silensky, Angela Stogner, Doug Thornburg and Peggy Zuckerman.

Christel Aprigliano is living with Type 1 diabetes and believes that the key to a good partnership is a focused, data-driven discussion on what matters most to patients. “Patient reported outcomes are crucial to the healthcare conversation. The more information we can share about what life is like for patients every day, the more questions we can ask each other, and the better we can help patients live well with the disease they have.”

The 2015-2016 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times in the coming months. This is the second Team of Advisors the company has formed. Last year, the inaugural group provided feedback to the research team and published a best practices guide that outlines new standards for how researchers can meaningfully engage patients throughout the research process.

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


Arthritis Awareness 101

Posted May 27th, 2015 by

You may have heard that arthritis affects the joints, but did you know that it’s an umbrella term used to describe over 100 medical conditions and diseases (known as rheumatic diseases)?1 Conditions that fall underneath forms of “arthritis” include rheumatoid arthritisgoutlupus, and fibromyalgia. And the symptoms can vary depending on the type of arthritis and the person living with the condition.

May is dedicated to raising awareness for arthritis (along with schizophrenia, lupus, CINDs, ALS…) – the people in the following video shared with the United States Congress what it’s like to live with arthritis:

May is drawing to a close, but it’s not too late to share your story on social media through the #ArthritisAwarenessMonth and #ArthritisMonth hashtags. And if you or someone you know has been diagnosed with any form of arthritis, the Arthritis Foundation has put together a collection of resources for everything from pain management to treatment options.

Don’t forget to visit the various arthritis communities on PatientsLikeMe – 7,488 people are sharing about living with rheumatoid arthritis, 4,795 with osteoarthritis and 1,527 with psoriatic arthritis.

Share this post on Twitter and help spread the word for arthritis.


1 https://www.rheumatology.org/about/arthritismonth.asp


Putting on purple for lupus awareness

Posted May 15th, 2015 by

If you’ve got something purple to wear, today’s your day – the Lupus Foundation of America (LFA) is encouraging everyone to “Put on Purple” to help raise awareness for lupus.

Lupus is an autoimmune disorder that affects millions of people worldwide, and the majority of these patients are women. Common symptoms include extreme fatigue, swollen joints, headaches, butterfly rashes and more. Check out these infographics from the LFA to learn more:

 

 

 

Today, the PatientsLikeMe Team is putting on purple to help shine a spotlight on lupus. Share your own photos on social media using the #POPGA or #PutOnPurple hashtags.

And if you are living with lupus, don’t hesitate to reach out to the community on PatientsLikeMe – over 7,000 people are sharing their experiences to help everyone solve the mystery of lupus.

 

Share this post on Twitter and help spread the word for lupus.


Bruce Cooper and Ed Godber talk about the AstraZeneca/PatientsLikeMe partnership

Posted April 13th, 2015 by

AstraZeneca and PatientsLikeMe announced today that they’re working together to use patient-reported data to shape future medicines and help improve patient outcomes. While it focuses on an initial set of four therapeutic areas (lupus, respiratory diseases, oncology and diabetes) the partnership signals a significant step forward for patients worldwide. Bruce Cooper, AstraZeneca’s Senior Vice President, Global Medical Affairs and Ed Godber, PatientsLikeMe’s Executive Vice President of Life Sciences Ventures explain why.

What is this partnership designed to do?

Bruce Cooper: We’re focused more than ever on having patient-defined value drive our scientific developments. To do so, we need to understand more about what patients are experiencing day-to-day. Our partnership with PatientsLikeMe allows us to tap into a patient network with more than 325,000 members. Every minute of every day, they are using the website to track their condition and give others like them information and support. They’re also contributing data for research. Now, their shared experiences will become real world evidence that accelerates AstraZeneca’s R&D capability and delivers patient-centric medicines.

Ed Godber: Ultimately, we want to help AstraZeneca partner with patients so that patients shape the medicines of the future, those medicines lead to better outcomes, and patients can live the lives they want. It’s exciting to see how Briggs Morrison (Executive Vice President, Global Medicines Development, AstraZeneca) and his team have truly committed themselves to transforming the discovery and development process by focusing on what patients experience, and need.

How does this collaboration actually help patients?

Bruce Cooper: We have significant potential to accelerate an upgrade to the system by making the patient voice part of the DNA of life science processes, helping to generate evidence to support our R&D and drive our science. We want to better understand what is important to patients about all aspects of their condition and treatment, and then shape the profile of the medicines we discover and develop. And we want to empower patients to thrive to the fullest degree from this upgrade in how data is generated and shared.

Ed Godber: We’re really aligned on that point. PatientsLikeMe was founded more than ten years ago with a mission to put patients first, and to make their voice central to medical advances. We did that by enabling patients to learn from the experience of thousands of others like them, sharing important and varied information about their health in a way that is compatible with healthcare and research. We’ve already seen that this kind of sharing can improve patient outcomes and transform healthcare. So it’s important that we take “patientomics” to the next level. With AstraZeneca, we not only expand the network and data, but also develop the science and processes by which healthcare and discovery can be increasingly responsive to patient needs.

What’s the first thing you’ll focus on as you begin to work together?

Ed Godber: We have been able to quickly get into a rhythm of sharing innovation and best practice around how to integrate the patient voice into AstraZeneca’s R&D. From here, in the short term, we’ll work together to create a “how to” guide to incorporate patient centricity into the design and execution of our studies. The agreement is for five years, so we’ll continue to define and evolve what we focus on.

Bruce Cooper: I’m pleased to say too that we have begun to collaborate with clinical operations to integrate patient insights into trial design and execution. We also expect our medical strategies to be enhanced across our Therapy Areas. There are a number of areas that can benefit from the data that PatientsLikeMe generates, and I’m looking forward to exploring even more.

What does the future look like with this partnership in place?

Bruce Cooper: I see a world where patients are even more engaged in research, because they have greater access to it, and can shape the way we conduct research with them. I also see patients helping to shape the healthcare environment as a whole by bringing what’s important to them onto the government’s healthcare agenda, and even shaping the way healthcare is delivered in clinical practice in disease communities.

Ed Godber: We believe this can have a significant impact on the speed at which patients get the full value out of new and effective medicines in the real world, using all of the useful data about a patient’s experience at the right times in disease research, drug development, regulation, access and care.

Share this post on Twitter and help spread the word.


Spreading the word for arthritis

Posted May 23rd, 2014 by

Lupus? Check. Fibromyalgia and ME/CFS? Check. ALS, cystic fibrosis, Huntington’s disease, mental health, schizophrenia, anxiety and depression? Check!

There’s been a ton of awareness going on in May, but there’s still one more theme to go – National Arthritis Awareness Month. This month, the Arthritis Foundation (AF) is encouraging us all to spread the word to everyone we know.

According to the American College of Rheumatology (ACR), arthritis is an umbrella term used to describe over 100 medical conditions and diseases, known as rheumatic diseases.1 The CDC estimates that 52.5 million adults in the United States have been diagnosed with some form of arthritis (including rheumatoid arthritis, gout, lupus, or fibromyalgia).2 Common symptoms generally include, but are not limited to:

  • Joint pain
  • Stiffness
  • Inflammation or swelling (most frequently in the hips, knees, hands and wrists)

If you’d like to learn more, the ACR has gathered a wealth of information on all the different kinds of arthritis. And if you’re not sure how to participate in Arthritis Awareness Month, here are a few places to start:

Finally, with over 6,000 members, the rheumatoid arthritis community is the largest group of arthritis members on PatientsLikeMe, but many more are living with osteoarthritis (3,994) psoriatic arthritis (1,278) and other forms of the inflammatory condition. They’re donating their personal health data to help others learn about life with arthritis, and they’re always sharing in the forum about symptoms, treatments, advice and more.


1 https://www.rheumatology.org/about/arthritismonth.asp

2 http://www.cdc.gov/arthritis/data_statistics/arthritis_related_stats.htm


Taking action for lupus awareness in May

Posted May 16th, 2014 by


If you think you look good in purple, you’re in luck – today is Put on Purple Day, sponsored by the Lupus Foundation of America. As part of the greater Lupus Awareness (Action!) Month in May, today is your chance to make lupus visible and learn about the effects of this chronic inflammatory condition.

Lupus is classified as an immunological disorder by the National Institute of Health, which means that it can affect anything from your joints, skin and kidneys to your heart, lungs and brain.1 Systemic lupus erythematosus is the most common type of lupus, but there are a few other kinds that are much more rare. The cause of lupus is unknown, and anyone can be diagnosed, although it mostly affects women. Some common symptoms of lupus include:

  • Pain or swelling in joints and muscle pain
  • Fever with no known cause
  • Red rashes, most often on the face
  • Chest pain when taking a deep breath
  • Hair loss
  • Pale or purple fingers or toes
  • Sensitivity to the sun
  • Swelling in legs or around eyes
  • Mouth ulcers
  • Swollen glands

Since these symptoms are frequently caused by many other health conditions, you can see why getting diagnosed with lupus can be a difficult process. Many people who are living with lupus don’t even know it yet! 2 3

To help raise awareness for lupus, snap a photo of yourself in purple and submit it to the Lupus Foundation’s Tumblr page. And if you’d like some more ideas for awareness in May, visit the official Lupus Awareness Month page for info on donations, toolkits, quick facts and more.

The PatientsLikeMe team all decked out for Put on Purple Day!

The PatientsLikeMe lupus community is growing, so if you’ve been diagnosed, reach out to the more than 4,000 members who know all about living with the condition. They’re donating health data on treatments and symptoms, and don’t hesitate to ask a question in the forum, either – the community is always up for sharing what they know.

 Share this post on twitter and help spread the word for Lupus Awareness Month.


1 http://www.niams.nih.gov/Health_Info/Lupus/lupus_ff.asp

2 http://www.niams.nih.gov/Health_Info/Lupus/lupus_ff.asp

3 https://www.womenshealth.gov/publications/our-publications/fact-sheet/lupus.html


“Band together for lupus awareness”

Posted May 10th, 2013 by

Lupus awareness has been observed since 1977. It was originally just one week in September. It’s since moved to October and now finally to May. And while the month may have changed, the message has always been the same; “raises awareness, secure funds and support those who are suffering” from this chronic inflammatory disorder.

 Lups

There are events planned throughout the month that you can get involved in. There’s World Lupus Day on May 10th, Put on Purple Day May 17th, and the Lupus Awareness Faith-Based Weekend May 18-19. There’s also the Walk to End Lupus Now. Check out the Lupus Foundation of America website to find a walk near you.

If you’re living with lupus, find others just like you in our growing community of almost 4,000 lupus patients on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forums.