In our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Tricia who’s writing about her journey with multiple sclerosis (MS) on her blog Love My MS Life. Some of you may know her on PatientsLikeMe as jakesmama. Check out her full interview below where she talks about the impact of connecting with others and why it took 11 years to get a diagnosis.

Why did you start blogging about your journey with MS and how has the community reacted?
I started blogging about my journey with MS last year. I’ve had MS for over 20 years and have been an avid fundraiser, MS Champion and MS Advocate ever since. My goal was/is to share my experiences with others living with MS to hopefully inspire and encourage them, while “telling it like it is.”

The reaction has been wonderful! When I hear people tell me they relate to my experiences because they “get it,” it makes me feel like I’m doing something good for others that share this disease.

In one of your posts, you mention that your first symptom started 11 years before you were officially diagnosed. Can you tell us about that?
When I was 13 years old, I had the virus mononucleosis. One afternoon the vision in my left eye became blurry but I disregarded it. The next morning I woke up and the vision was basically gone in my left eye. I was dizzy, nauseous and was taken to the hospital. The doctors called my bout of optic neuritis a “fluke thing” and I went home. During my high school years I would have bouts of optic neuritis in my good eye and would be given oral prednisone to bring the swelling of the optic nerve down. It wasn’t until my son Jake was nine months old that my ophthalmologist sent me for an MRI. This was 11 years later and when I was diagnosed with MS.

What’s it been like to connect to others with MS on PatientsLikeMe?
A friend of mine told me about PatientsLikeMe years ago. It’s a great way to connect with others living with MS, to compare symptoms and offer suggestions. I use it as a helpful tool to track my disease progression, keep notes, and learn from others.

What’s one bit of knowledge no MS patient should be without?
One of my favorite quotes is, “Never, never, never give up,” by Winston Churchill. I believe all patients living with MS struggle daily whether we can see it or not. I choose to have HOPE for my future and HOPE for a cure!

If you’re living with MS, find others just like you in our growing community of more than 31,000 MS 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 forum.

Recently, our ALS community mourned the loss of Persevering, a highly proactive three-star member who was known for his unfailing efforts to support fellow patients, record and share data, report website problems and recruit ALS clinical trial participants.  Offline, he was also a tireless advocate for ALS awareness and research, attending conferences and lobbying on Capitol Hill.  Persevering passed away on September 10, 2012, at the age of 42, and is deeply missed by both our members and our staff.

While we are unable to recognize every member who passes away on our blog, we wanted to take this opportunity to highlight how our community responds to loss as well share what happens to a deceased patient’s profile data.  When our community managers are notified of a member’s death – typically by a family member, caregiver or another member who was close to the person – they add the date of death to the member’s profile. This automatically updates their icon nugget with a black band to show that the member has passed away. (See image below.)

Also, our members often create a forum thread about the member, to which the tag “In Memory” is added by other members or the community manager so that it is searchable and “followable” using this tag. In these emotional threads, members acknowledge the deceased member’s contributions, reflect on the loss to the community and pay their respects.  Essentially, it’s a place for remembering a friend, telling stories, supporting one another, sharing funny memories and sending condolences to the family.

Each month, our community managers update our “In Memoriam” thread in the PatientsLikeMe forum with a list of members who have passed away during the previous month, and they include links to each profile. That way, members who haven’t logged on for a while or may have missed the news of someone’s passing can stay up-to-date.  Members can also choose to “follow” that thread if they wish to be notified whenever there is a new monthly update.

As for the profiles of members who have passed, they effectively create a legacy of data on our site, as their profile pages remain accessible to our members in perpetuity.  As a result, present and future members may continue to access these profiles to compare and learn from similar experiences.  Persevering’s detailed treatment, symptom and disease progression data, for example, will live on as a rich source of information and insight for other ALS patients.  What was his experience in the Phase II Study of NP001?  Read his comprehensive treatment history here.  What side effect led him to stop taking Riluzole?  Find out here.

So as you can see, Persevering is still helping others today, and we thank him for that.  We also want to recognize his contributions to our recent publication about NP001.  We have dedicated this new work to him as it was inspired by his keen desire as a “citizen scientist” to analyze and understand the impact of NP001 on his ALS progression.

As a result of these myriad achievements, Persevering will be posthumously awarded the Stephen Heywood Patients Today Award at the 8th Annual ALS Therapy Development Institute Leadership Summit on November 1st in Boston. Learn more about this beloved and influential ALS advocate by checking out the Facebook page created in his honor, entitled Persevering – You Are a Game Changer.

The term “hat trick” originated in 1858 after English cricketer HH Stephenson successfully bowled out three batsmen with consecutive bowls and he was presented with a hat to commemorate his feat. In June, PatientsLikeMe’s research team scored a hat trick of our own by publishing three new studies in scientific journals in just four days, bringing our total number of published studies to 27.

As employees at a start-up company, we all wear many hats – literally, as you can see from the photos below, and figuratively, in terms of our responsibilities as scientists, product developers and business people across different disease areas. For instance, in this trio of papers, we address research issues in multiple sclerosis (MS), ALS and mood disorders. Click on the study titles below to read the full papers and a big thank you to all of our patients for sharing your voices and making this research possible.

Monday, June 18th – First PatientsLikeMe study published.

The multiple sclerosis rating scale, revised (MSRS-R): Development, refinement, and psychometric validation using an online community

Members of our MS community will be familiar with the MS Rating Scale (MSRS), which is their primary outcome measure. We developed it a few years ago to address an unmet need for a brief, easy-to-use rating tool that covered more areas than simply walking. In collaboration with a neurologist, we sketched out our first version of the MSRS, which has now been used over 90,000 times by our 28,000+ MS members to share your progress, track your relapses and disability, and gain insight into how your treatments are working.

Published in the Journal of Medical Internet Research, this new study describes work to improve the MSRS to a revised version (the MSRS-R) and establish that the instrument measures what it is supposed to measure (reliability), that it correlates well with other instruments (concurrent validity) and that it allows differences between groups of patients (sensitivity to change). This process of “validating” a patient-reported outcome (PRO) is an important step in increasing the value of the data that we produce for researchers. Studies are underway right now to continue improving the instrument and compare it to doctors’ ratings of patient disability.

As with all outcome measures we develop at PatientsLikeMe, we have licensed the MSRS-R for anyone to use freely in their own research studies. This work also serves as a foundation for our resident predictive modeler and particle physicist Dr. Tim Vaughan to begin work on predicting the course of an individual patient’s disease using your MSRS scores!

Tuesday, June 19th – Second PatientsLikeMe study published.

E-mental health: A medium reaches maturity

The Internet has transformed many aspects of healthcare in the past decade, and to open a special issue on “E-Mental Health” in the Journal of Mental Health, our R&D Director Dr. Paul Wicks was commissioned to write a special editorial.

Available by clicking the link above, the paper describes the progress of online systems for people with mental health issues, from government-provided resources (such as this UK NHS Choices site about self-harm) to commercial, computerized cognitive-behavioral therapy programs like “Beating the Blues” and collaborations between different sectors of the health system. For instance, in the UK if you Google “suicide” there is a special message from the Samaritans mental health support service right at the top of the page.

At PatientsLikeMe, our vibrant mood community has been active since 2008, and our published research has shown that it provides improved outcomes to many of our members.

Thursday, June 21st – Third PatientsLikeMe study published.  Hat trick completed.

Mining Online Social Network Data for Biomedical Research: A Comparison of Clinicians’ and Patients’ Perceptions About Amyotrophic Lateral Sclerosis Treatments

As you probably know, the story of PatientsLikeMe starts with ALS and trying to find treatments that can improve the symptoms, including anxiety, stiffness, or constipation. Back in 2003, ALS nurse Dallas Forshew and Dr. Mark Bromberg published a small study describing massive variation in the way ALS doctors from 39 specialist centers treat the symptoms of ALS. This data was also described in our 2010 TEDx Berkshires talk about the value of crowd-sourced data.

In this new study published in the Journal of Medical Internet Research, we collaborated with researchers at the University of Utah to compare the passively collected ALS patient data from our system with what the clinicians said. Although they agreed in most areas, there were split opinions too, particularly when it came to the perceived level of efficacy that these treatments had. Click the link above to read more.

This paper is also notable for being our own Shivani Bhargava’s very first scientific publication! Shivani started with us as an intern, then became a research assistant, and has recently made a career change to start studying as a software engineer. A true renaissance woman!

You may remember our interview with ALS advocate Debra Quinn from last fall.  Today, we’d like to introduce you to another ALS patient activist in our midst:  Tom Murphy, a PatientsLikeMe member since January 2011.  As part of the ALS Treat Us Now nonprofit group, Tom and several other ALS patients around the country have launched a petition on Change.org that’s gaining steam.  Their goal?  20,000 signatures.

Addressed to “corporate citizens, FDA executives and neurologists,” the petition asks that “compassionate use” drugs be made available to ALS patients now.  What this means is that Tom and the Treat Us Now group want promising Phase II drugs showing safety and efficacy to be made available to ALS patients prior to FDA approval.  The reason is simple. ALS patients, who face an average life expectancy of two to five years following diagnosis, don’t have time to wait.

Check out our interview with Tom to learn how he became part of ALS Treat Us Now and what two experimental drugs his group is focused on in particular.

1.  How did you get involved in the “Treat Us Now” movement?

The ALS community seems to be a very close-knit group of people who readily share information and collaborate openly.  This is often related to the objectives of spreading ALS awareness, accelerating new treatments for people with ALS, and most importantly, doing whatever we can to assist in the identification and development of a cure for this rare and terminal disease that has been with us for way too long without an effective treatment or hope for a cure.

Since being diagnosed with ALS in December 2010, I (and many others like myself) have developed a very extensive “network” within this community utilizing blogs, email, Facebook, Tumblr, Twitter, LinkedIn, PatientsLikeMe, ALS Therapy Development Institute (ALS TDI), the Muscular Dystrophy Association (MDA) and the ALS Association (ALSA) and other ALS-related internet sites.

This network included Ms. Sherron Greene from Kaplan, LA (whose brother Kendall was officially diagnosed in October 2010), who was working with the Treat Us Now group and reached out for my assistance with some research and ALS points of contact at various medical facilities involved in ALS clinical trials. I wanted to be part of this Treat Us Now team and the rest is history.

2.  What kind of response have you received to the petition so far?

As of 12:00 p.m. EST today, we’ve gotten 10,520 petition signatures.  I’d ask folks to please take the time to watch the complete video below about my friend Kendall Saltzman, and you will begin to understand much better the urgency of our fight regarding compassionate use drugs for people with ALS.

3.  Tell us about the two drugs – dexpramipexole and NP001 – mentioned in the petition.

Highly related to the Parkinson’s disease drug pramipexole (Mirapex), the neuro-protectant dexpramipexole (Empower) may slow ALS progression by keeping the power on in deteriorating motor nerves. Dexpramipexole is thought to maintain mitochondrial function in people with ALS by detoxifying reactive oxygen and nitrogen species.

In the Phase II study, ALS progressed 31% slower in patients taking 300mg of dexpramipexole daily compared to placebo.  It also appeared to be safe and well-tolerated.  The drug, now licensed to Biogen, is currently being tested at the Phase III stage in about 800 patients at 81 sites worldwide.  ALS TDI calls it “extremely promising.”

In May 2011, I was one of the first 10 ALS patients to be enrolled in the Phase III trial at the University of Virginia.  The FDA fast-tracked dexpramipexole in 2009 due to the need for a more effective treatment for ALS.  Initial Phase III results are expected in 2013.  (Learn more about dexpramipexole here.)

The experimental drug NP001, administered by intravenous injection, is still in the Phase II clinical trial stage.  NP001 may lower the levels of activated cytotoxic macrophages in people with ALS, thus reducing inflammation and further injury to the motor nerves.  The Phase II double-blind, randomized, placebo-controlled trial is ongoing at several US locations.  Unless an early usage allowance is granted, it may require an additional 5-7 years of testing.

Led by top ALS researcher Dr. Robert G. Miller of Forbes Norris MDA/ALS Research Center in San Francisco, this trial is notable as the scientific foundation of NP001 is extremely sound.  Andrew Gengos, CEO of Neuraltus, the manufacturer of NP001, says, “Our hope is that if we can reduce or eliminate the neuroinflammation, it will have a beneficial effect on the underlying progression of ALS.”  (Learn more about NP001 here.)

4.  Beyond signing the petition, what else can people do to become ALS activists?

Take part in the activities and initiatives of the ALS Association (ALSA), the Muscular Dystrophy Association (MDA), the ALS Therapy Development Institute (ALS TDI, founded by PatientsLikeMe’s Jamie Heywood) and Treat Us Now.

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What does PatientsLikeMe think about compassionate use?  “Our society needs to rethink the balance of risk and reward to allow patients the right to pursue the treatments they believe can help them,” says Co-Founder and Chairman Jamie Heywood, whose brother Stephen died from ALS. “This is a complex problem with many balancing issues, but I believe that there needs to be a mechanism for those that consent and who understand the risks to pursue options they chose regardless of regulatory status. Those facing illness should not be denied the right to self-determine their own path to life, liberty and the pursuit of happiness.”

(This post has been repurposed from an article written by PatientsLikeMe’s Ben Heywood for eyeforpharma’s Patient’s Week 2011.)

Real-world, patient-reported data is becoming more important to you, the patient, as well as everyone in healthcare. One source of that data is patient registries.

According to the US Department of Health & Human Services’ Agency for Healthcare Research and Quality (AHRQ), a patient registry is “a database of confidential patient information that can be analyzed to understand and compare the outcomes and safety of health care.” Ultimately, the goal of capturing and analyzing this data (shared by multiple sources like hospitals, pharmacies, physicians and patients) is to learn from one another and improve healthcare. Like registries, PatientsLikeMe understands the importance of capturing data in a meaningful, computable and quantifiable way.

However, behind every piece of data is a patient.

So, in the spirit of putting patients first, we began thinking about the next generation of a patient registry where you benefit in real-time from what you share. It would need to be a situation where you could openly share longitudinal demographic and clinical data about your disease while using online tools to improve your outcomes. It couldn’t be just silos of health data focused on one disease at a time; it would need to encompass data on all diseases and inspire you to share information about those co-morbidities too.

If this next generation of a “registry” could ensure long-term data sharing, can you imagine how much meaningful insight would be available for patients and industry alike? We could…and that’s what we’ve been building at PatientsLikeMe for the last five years. We’re excited about what that means for patients like you each day, as well as what it means for the future of medicine.

We know you believe in community—we’ve seen it in your one-for-all mindset where you can share what you experience and see the same for every other patient like you; a mindset where you expect us to then pass on those experiences to researchers, companies and others who want to learn together and improve healthcare. When we tell you how we make money (by sharing your de-identified data with our trusted partners), many of you have said, “Great. Share! Share! Share!”

We have no doubt that sharing is the essential ingredient in accelerating research, ensuring patient safety and making better treatments. As we look beyond the chat room and beyond the traditional patient registry, we see a world where patients like you are openly sharing meaningful, computable and quantifiable data with each other to make your lives better…and, in turn, making all of medicine that much better too.

Can you see it too?  Tell us your thoughts on what the ideal patient registry should include.

Last week, in Part I of this interview, PatientsLikeMe member and blogger Michael Burke shared his sister Linda’s struggle with type 1 diabetes.  Today, we learn about his own type 1 diabetes journey, including his June 2011 kidney transplant as a result of diabetes-induced kidney failure.

1.  What diabetes complications have you faced?

Diabetes is a disease that appears to be misunderstood by most people, in that the consequences of the disease can lead to many different complications.  As I mentioned earlier, both Linda and I suffered from diabetic retinopathy…essentially, you can go blind from diabetes.  Another complication is nephropathy, or kidney disease.  For me, this led to kidney failure and the eventual need for a kidney transplant this past June.

Heart disease is another major complication.  Personally, I never knew that I had any heart disease until one day my primary care physician sent me for a routine stress test.  During the stress test, the cardiologist felt it necessary to immediately admit me to the hospital and do a cardiac catheterization the next morning.  When he did, he found two blockages in my right coronary artery – one was a 90% blockage and the other was an 85% blockage.  I then had several stents placed.  After two years, those stents were becoming ineffective, and I required heart bypass surgery.  Lucky for me, there was a heart surgeon in Boston who was doing bypass surgery robotically.  What this meant for me was a much smaller incision (about an inch and a half compared to the whole chest being opened up), and being a diabetic, less risk of infection and a shorter recovery time.

Another complication is [diabetic] neuropathy, or nerve damage.  Typically, this usually affects the feet, but other parts of the body can be affected as well.  As for Linda and I, the neuropathy is/was primarily in our feet.  For Linda, it was extremely painful, with the feeling that you are constantly being poked in your feet with something very sharp.  For me, the feeling has been quite different, in that there is no feeling, at least around my big toes, which in turn has caused some balance issues for me.  Neuropathy is serious, it’s not just that it is painful for some and a loss of feeling for others.  It can also lead to amputation of your toes, your foot, or in drastic circumstances, part of or all of your leg.

2.  What was your kidney transplant experience like, and how are you doing now?

I went through a whole lot of emotions over the course of getting this new lease on life.  Although I had been prepared by my kidney doctor over the last several years that I was most likely going to need a kidney transplant, the day I sat with the transplant team for the first time was absolutely frightening and surreal at the same time.  It’s hard to explain.

I just remember sitting with the transplant team and when the transplant doctor said, “Ok, we will put you on the transplant list within the next few days, and we will move forward,” my heart was pounding so hard I thought it was going pop out of my chest.  There is also a lot of anxiety that goes along with the whole transplant process.  At first, I didn’t know where the kidney would come from.  I knew there were family members who said that they wanted to be tested and now I was also on the national transplant list.

When my brother Tommy was starting the testing process, I kept going back and forth in my head.  It would be great to have someone close to me donate, but then there was the guilt.  If I ever rejected their kidney now they are left with just one.  As it turned out, Tommy was a 5 out of 6 antigen match, and he donated his kidney to me in June.

I had often heard before the transplant that you won’t understand how badly you felt or how sick you were before the surgery until after the surgery.  That could not be a truer statement.  I never really felt sick before, and I have been told that is because kidney disease can be very slow and progressive.  However, looking back today, I can honestly say that there has been a 180 degree turnaround.  I have much more energy and I just generally feel well – it has been a huge difference, and I have Tommy to thank for that.

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Are you a diabetes patient as well?  In honor of American Diabetes Month, share your thoughts and stories at CallingAllTypes.com.

FOR IMMEDIATE RELEASE

Nonprofit and “Not Just for Profit” Announce Collaboration at PartneringForCures Event

NEW YORK, NY – November 7, 2011 - Today, PatientsLikeMe and R.A.R.E Project, a nonprofit advocacy and support group for patients with all rare diseases, announce a new partnership to find and connect 1 million rare disease patients to share and learn everything possible about their conditions.  The organizations, co-presenting at the PartneringForCures event today in New York, are launching an international rare disease awareness campaign in 2012.

“There are 35 million patients in the U.S. with 7,000+ rare diseases and we want to find them, connect them and support them in sharing and learning by their specific disease and across all rare diseases,” says Dean Suhr, Chief Innovation and Community Development Officer at R.A.R.E.  “We’re excited to work with PatientsLikeMe because their open patient registry allows patients to contribute to research, while getting immediate benefits, like improved quality of life, from sharing this information with others.”

The goal of this collaboration between R.A.R.E and PatientsLikeMe, an online health community that started in 2005 for rare disease patients and is now open to everyone, is to allow for better shared learning and acceleration of discovery by rapidly connecting patients to researchers, companies, nonprofits and patients like them. The partners will combine resources to provide patients with the opportunity to make online and local in-person connections, engage nonprofits and local specialists, and contribute their health data to the open patient registry at PatientsLikeMe. Unlike other registries, PatientsLikeMe allows patients to query the data to compare their medical data to others with similar diseases, symptoms, or therapies so they can also compare their data across other diseases.

“The key to accelerating research for any patients, although particularly powerful for those with rare conditions, is to have efficient access to well characterized patient populations willing to be part of research,” adds Jamie Heywood, Co-founder and Chairman of PatientsLikeMe. “It’s terrifying to think you’re alone and manage your rare illness with a doctor who might not have ever seen another patient like you. We will change that.”

For more about the R.A.R.E Project, including current awareness campaigns, go to: http://rareproject.org.  For patients and nonprofits that want to join PatientsLikeMe, go to http://www.patientslikeme.com.

ABOUT R.A.R.E PROJECT

The R.A.R.E. Project exists to raise rare disease awareness, unify and empower a vibrant global rare disease community, and fund innovations to support ‘in-their-lifetime’ rare disease research.

ABOUT PATIENTSLIKEME

PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on www.twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]

FOR IMMEDIATE RELEASE

PatientsLikeMe Continues Report Series on Real-World Patient Experiences with Multiple Sclerosis Medications

CAMBRIDGE, MA – November 3, 2011 – In the second report of a series on Multiple Sclerosis (MS) disease modifying therapies (DMTs), PatientsLikeMe reveals that MS patients perceive Copaxone as having comparable efficacy and tolerability profiles to the interferon therapies Avonex and Rebif.  However, all three medications are perceived as trailing in efficacy and tolerability to Gilenya, Tysabri and Betaseron.  In the report’s analysis of 3,200+ patient conversations about MS DMTs from January-June this year, PatientsLikeMe also finds that Copaxone is perceived as safer than other MS DMTs.

“Patients’ sharing of their Copaxone experience may adversely affect its demand as a first line therapy since patients are becoming more influential in their treatment decisions,” says David S. Williams III, Chief Marketing Officer at PatientsLikeMe. “What has become clear through these reports is that real-world evidence will have a major impact on relative pricing for MS DMTs and play an increasingly important role in access decisions.”

This 46-page report – entitled “Does Copaxone patient experience in the real world justify its value?” – quantitatively and qualitatively analyzes 4,100+ MS patients with experience using Copaxone.  Other report sections include:

• The Patient Voice in Treatment Discussions: Copaxone was discussed in 25% of all patient conversations about MS DMTs.
• Copaxone Efficacy and Side Effects: Of the 1,100+ MS patient evaluations on Copaxone’s efficacy and side effects, 30% reported experiencing “moderate” to “major” efficacy, while 26% reported “moderate” to “severe” side effects.
• Copaxone Price vs. Value: Is this medication appropriately priced compared to other MS DMTs given real-world evidence regarding efficacy and side effects?

The report is available for purchase at http://partners.patientslikeme.com/copaxone-report; a free abstract is available for download.

Note to Editor:  All data cited from this report must be sourced as originating from PatientsLikeMe®

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on www.twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]

As we’ve discussed in recent blog posts, November is American Diabetes Month.  To help you learn about diabetes from a patient’s point of view, we interviewed Michael Burke, a PatientsLikeMe member who writes “Life on the T List”, a blog about his life as a diabetic before and after a kidney transplant.

But as you’ll soon see, Michael’s life as a diabetic was first influenced by that of another diabetic – his older sister Linda. (He himself was not diagnosed until he was a teenager, more than 10 years after Linda’s diagnosis.)  Below is Michael’s chronicle of her lifelong struggle with type 1 diabetes, and next week we’ll share his own journey, including his June 2011 kidney transplant. Don’t miss this moving story of a family profoundly affected by diabetes.

Tell us about your older sister Linda.

Where do I begin?  Linda was someone who I looked up to my whole life when we were growing up, and even though she is no longer here, I still look up to her.  Linda was diagnosed with [type 1] diabetes when she was six years old, which made me three when she was diagnosed.  So, to say that I grew up with diabetes my whole life is not a stretch.

I didn’t realize it early on, but for Linda, and many diabetics during that time [the 1970s-1980s], staying in control of diabetes was very difficult.  Daily testing was very rudimentary compared to testing today.  Testing back then relied mostly on urine dip sticks and trying to determine what color the test strip was and then compared that to color chart on the bottle.  When the glucose meter was finally introduced, it was as if you could hear a collective sigh of relief from all diabetics.

Linda struggled with her diabetes through much of her childhood and into high school, and then when she was finally in college, it was really taking a toll on her.  Ever since being a child, Linda had a dream of becoming a nurse, perhaps because of the care she received from nurses growing up when she was at the doctor’s office or in the hospital.

If there was one thing that I have always taken from Linda, it is her determination.  She never once wanted to let diabetes control who she was.  While in nursing school at Simmons College in Boston, Linda began to lose her eyesight due to diabetes, among experiencing other complications such as the onset of kidney disease.  But she was not about to let this stand in her way of becoming a nurse.  In fact, [my brother] Tommy and I would go through her nursing books with her and help her study when she was having difficulty seeing the pages.

A friend of our family who worked in the ophthalmologic division of Johnson & Johnson at the time told my parents of a retina specialist in Boston that may be able to help Linda.  The doctor was Dr. Edward Ryan.  Dr. Ryan and Linda had a great doctor/patient relationship.  He took a special interest in Linda’s case.  He began using laser surgery on Linda.  All I remember from those treatments was Linda screaming in pain.  The procedure has changed some since then, because I have had it done and it was not painful, probably due to the anesthetic.  Needless to say, Linda and the rest of our family credited Dr. Ryan with saving Linda’s sight – to the point that she was able to graduate nursing school and become a nurse at Children’s Hospital in Boston.

One of the areas many people don’t realize that diabetes affects is your heart.  In 1989, at the age of 24, Linda’s body couldn’t take the constant pounding diabetes was giving her, and, on March 14th, she passed away from underlying heart disease brought on by diabetes.

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Be on the lookout for Part II of Michael’s interview next week.

FOR IMMEDIATE RELEASE

TWO OUT OF THREE PATIENTS REPORT DISCONTINUING TYSABRI WITHOUT DOCTORS’ ADVICE

PatientsLikeMe Releases First in Series of Reports on Real-World Patient Experiences with Top Multiple Sclerosis Drugs

CAMBRIDGE, Mass. — September 22, 2011 — In the first report of a series on Multiple Sclerosis (MS) disease modifying therapies(DMTs), PatientsLikeMe reveals that nearly two-thirds (64%) of patients who report discontinuing the use of Tysabri (n=323) did not cite “doctor’s advice” as a reason. “Side effects too severe” and “did not seem to work” topped the other reasons cited by patients. The report goes on to reveal that patients stop Tysabri due to side effect severity less frequently than patients who discontinue other DMTs for that same reason.  The PatientsLikeMe report is the first of five in a series focusing on how patients are experiencing and evaluating DMTs in the real world.

“People with MS and other conditions have become much more than just consumers of prescription medications, they are now customers who wield a high level of influence on treatment decisions,” says David S. Williams III, Chief Marketing Officer at PatientsLikeMe. “The goal is maximizing health outcomes for patients.  Clinicians can use the real-world insights from this report to collaborate better with patients in treatment planning while manufacturers can use them to better design adherence programs to reduce inappropriate discontinuation.”

This 40-page report — titled “Does Tysabri patient experience in the real world justify its value?” — analyzes the experiences of more than 12,000 MS patients who are taking, or have taken, Tysabri or other DMTs.  In the report, PatientsLikeMe evaluates:

• Tysabri Price vs. Value: Is this drug appropriately priced given real-world evidence regarding efficacy and side effects?
• The Patient Voice in Treatment Discussions: Of the 4,083 patient conversations mentioning one or more MS DMTs from January-June this year, Tysabri commanded 27% share of patient voice.  What percentage of Tysabri-related discussions were focused on progressive multifocal leukoencephalopathy (PML) or JCV (John Cunningham virus) antibodies?
• Efficacy and Side Effects: More than half (55%) of the 500 Multiple Sclerosis patients who have taken and evaluated Tysabri experienced “moderate” to “major” efficacy compared to interferon therapies which average 33% moderate to major efficacy.

The report is available for purchase at http://partners.patientslikeme.com/tysabri; a free abstract is available for download.

Note to Editor:  All data cited from this report must be sourced as originating from PatientsLikeMe®.

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on Twitter and the PatientsLikeMe blog.]

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Every year, PatientsLikeMe sponsors run/walk/bike teams around the country through PatientsLikeMeInMotion.

Led by a three-star member – someone with a complete health profile at PatientsLikeMe – each team receives bright blue PatientsLikeMe t-shirts, business cards and a donation towards their fundraising goal. Some of the events our members participate in include the Parkinson’s Unity Walk, the National Walk for Epilepsy (Epilepsy Foundation), the Walk to Defeat ALS (ALS Association) and Walk MS (National MS Society).

What’s happening this year?  2011 is off to a great start with 30 sponsored teams as of the end of June.  When you compare that to two years ago – when we sponsored around 40 teams for all of 2009 – you can see how the PatientsLikeMeInMotion program has grown.  Wondering whether any of these spring teams were raising awareness for your condition(s)?  Here’s the list of conditions represented for 2011 thus far:

• MS
• ALS
• Parkinson’s
• Cancer
• Epilepsy
• Autism
• Prader-Willi Syndrome
• Mental Health

We’re thrilled to support our members in this way, and we especially love seeing the positive connections that are forged when our members meet “offline” at these uplifting events.  That’s why we’ve asked PatientsLikeMeInMotion team members to submit their favorite photos from recent events.  Check out our Spring 2011 PatientsLikeMeInMotion Flickr Slideshow to see the enthusiasm firsthand:

We’ve also gotten some wonderful messages from team leaders this year that illustrate the impact of the program:

• “Thanks so much for everything, I can’t wait to give the team their shirts and wear them with pride.  You all are awesome.”

• “Thank you for sponsoring me in Walk MS! I am so grateful for your support, which brings me one step closer to achieving my fundraising goal. More importantly, it brings us one step closer toward a world free of multiple sclerosis.”

• “Our team enjoyed the t-shirts and stood out in the crowd in the bright turquoise. We also enjoyed answering questions from those who asked about the t-shirts and the website, about which we gladly shared information!”

Organizing a run/walk/bike team for late summer or fall? Sign your team up for PatientsLikeMeInMotion sponsorship today. (Please allow 3-4 weeks lead time.)

How do you make sense of all the information and stories that come with chronic illness? That’s exactly the challenge that the Patient Experience Team has taken on at PatientsLikeMe. Our goal is to create data visualizations that help you gain insight into your health, recognize emerging patterns and learn from one another’s experiences.

Recently, I flew to Seattle to give a talk entitled “Adventures in Data Visualization” as part of the Web App Masters Tour (WAMT). (I’ll also be presenting it again at the final WAMT event in Minneapolis, which takes place June 27-28th.) During my talk, I share our process for translating people’s individual health stories into data – which, unlike text-based stories, are something that can be measured, compared and visualized.

Data visualizations are great at helping people process complicated information quickly and answer questions that can be much harder to answer other ways. For example, is my experience normal? How are my treatments affecting my symptoms? Is my quality of life improving? What happens if I stop taking my medication? With data visualization, you can see patterns that correspond with changes to your medications, lifestyle modifications and more.

Ultimately, PatientsLikeMe is creating a shared visual language that allows your story to be part of a larger story, one that is enriched by data. We are continually working to make it easier for you to learn from the data you share, and that patients like you are sharing as well. Why is this so important? It allows you to put your story in context and find others like you. Ultimately, it allows you to see what you can do to achieve the best health outcome possible.

Have you “seen” something on your profile charts – or that of other patients – that helped you answer your questions? Share your experiences with data visualization in the comments section.

Cinarizina is an international brand of the prescription drug Cinnarizine, an antiemetic (anti-nausea) agent used for symptoms of inner ear disorders.  These symptoms may include vertigo, dizziness, tinnitus, nystagmus, nausea and vomiting. Cinarizina is also used to prevent motion sickness when taken in advance.

If you’ve tried Cinarizina, we encourage you share your experiences at PatientsLikeMe, where more than 130,000 patients are using our unique data-sharing platform to review all types of treatments, including prescription drugs, over-the-counter drugs and supplements.  Our treatment evaluations cover important data points such as dosage, effectiveness, side effects, cost and adherence so that you can easily share and compare experiences with others.

Currently, one patient reports using Cinnarizine (the generic version of Cinarizina) to treat Meniere’s disease, which is characterized by a sudden onset of dizziness, low-frequency hearing loss, tinnitus and the sensation of fullness in the affected ear.  This patient, a 55-year-old male taking 25mg daily, reports no side effects but rates the effectiveness as non-existent.

JOIN PATIENTSLIKEME TODAY

What about you?  Have you taken Cinarizina or another brand of Cinnarizine?  Join PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay to exchange advice and support, research common treatments and learn from other patients like you.

Available without a prescription in France, Euphytose is an herbal treatment for anxiety and depression that contains six plant extracts:  Hawthorn, Passionflower, Valerian, Ballota foetida, Cola nitida and Guarana (Paullinia cupana).  The latter is available in France as an over-the-counter anxiolytic (anti-anxiety) agent.

Producing both sedative and stimulant effects, Euphytose combines traditional herbal remedies for anxiety with components that are thought to act on central benzodiazepine receptors.  It had been studied in one short, double-blind, placebo-controlled trial involving 181 adults, with a statistically significant effect found for both reduction in symptoms and clinical response to Euphytose over placebo at the end of the trial.  In terms of safety, it was well-tolerated in the study with no difference in the number of adverse effects compared with placebo – and no serious adverse effects.

At PatientsLikeMe, where more than 125,000 patients are sharing their experiences with all types of treatments, two patients report trying Euphytose.   The reported purposes were “Anxious mood,” “Panic disorder” and “Insomnia.”  Effectiveness was rated as either “Moderate” or “Slight,” while side effects included “Drowsiness” and “Problems concentrating.”  Here’s what one patient with panic disorder wrote on his Euphytose treatment evaluation:  Makes you a little drowsy, but helps in limiting the effects of expected stressful situations.”

JOIN PATIENTSLIKEME TODAY

Have you taken Euphytose or another over-the-counter remedy for anxiety and depression?  Join PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay to exchange advice and support, research common treatments and learn from other patients like you.