24 posts tagged “treatments”

Your data doing good: IPF treatment experiences

Posted December 12th, 2015 by

Every minute of every day, people are sharing their health data on PatientsLikeMe. Some of you are focused on tracking how you’re doing over time. Many want to make sure the next person diagnosed can learn from your experience. All are contributing to the greater good, because what you share helps researchers see what patients really need.

During #24DaysofGiving, we’re highlighting some of the most important things we’ve learned from data that members like you have selflessly shared, and all the good your data donations are doing.

Every year, the Food and Drug Administration (FDA) approves new medications that can help people living with life-changing conditions. But with new treatments come new questions. And that’s exactly what happened at the end of 2014 for people living with idiopathic pulmonary fibrosis (IPF).

IPF is a rare condition that causes scarring in deep lung tissue over time and has no cause or cure, and before October 2014 no available treatment. That’s when two FDA-approved medications for the condition became available, simultaneously. They had the potential to make a difference in the lives of IPF patients, but how could they learn which medication might be right for them? If they started taking one of the new treatments, would they experience the side effects that were reported by the FDA? Would the side effects go away, or get better? In short: were the drugs worth taking?

We set out on a journey with members of the PatientsLikeMe IPF community to get answers from the best source possible—other patients who had already started to take the treatments. We worked together to understand their complete experience, everything from how they learned about the new treatments and if they were hard to access, to their side effects and what might cause them to switch treatments. The data that the community shared (all of it) is helping other members better understand what could work for them.

Here’s just some of what we discovered, and what others are learning, thanks to the data that members donated:

About making choices and getting access
Physician buy-in matters. In fact, physicians were active participants in 60-70% of the treatment decisions IPF patients made. But once they made a choice to begin treatment, patients were challenged to work around obstacles that prevented them from getting access to the treatment, things like how to get reimbursed and even where to fill the prescription.

About the side effects vs. the clinical trial
The overall side effects when first starting the medication were similar. Most patients, between 69-72%, reported ‘none’ or ‘mild’ side effects for one or other treatment. Patients also reported some side effects more often than those patients who were in the clinical trials. For one medication, patients reported higher rates of decreased appetite compared to the clinical trial participants (27% vs. 8%) and sensitivity to sunlight (18% v. 9%).  For the other treatment, patients reported a higher rate of decreased appetite (19% v. 11%) compared to the clinical trial participants.

Switching it up
Most patients, between 55-57%, aren’t sure if they are satisfied with their treatment, but only a small percentage, between 8-10%, report that they are likely to stop taking the medications

There is a lot more to learn here:

We’ll all continue to learn in real time as more and more IPF members share their experiences with the treatments, but the IPF example underscores why giving your data matters so much—to you, to others, and to research. We’re truly better together.

Share this post on Twitter and help spread #dataforgood during #24DaysofGiving.


Life with Bipolar I Disorder: What We’ve Learned

Posted December 9th, 2011 by

Yesterday, our interview with bipolar blogger Andrea gave you a glimpse into what it’s like to live with bipolar I disorder.  Today we take a deeper look into this mental health condition using the data and experiences shared by our 1,237 bipolar I members.

First off, however, you may have heard of something called bipolar II as well, so let’s talk about how bipolar I and II differ.  Bipolar I is a subdiagnosis of bipolar disorder that conforms to the classic concept of manic-depressive illness.  It is characterized by at least one manic or mixed episode, and there may be episodes of hypomania (marked by elevated mood, hyperactivity and grandiosity) and major depression as well.  In contrast, bipolar II disorder – which is slightly more prevalent at PatientsLikeMe with 1,556 patients reporting it – is marked by depressive episodes that are more frequent and more intense than the manic episodes.

A Snapshot of the Bipolar I Community at PatientsLikeMe

Now, let’s take a look at the wealth of data found at PatientsLikeMe.  To give you a sense of the makeup of our bipolar I patients, 74% are female, more than 78% have an official bipolar I diagnosis, and approximately 40% report experiencing their first symptom prior to the age of 19.  What exactly are the symptoms of this condition?  Some of the most commonly reported include delusions, excitability, flight of ideas, grandiose thinking, hallucinations, irritability and paranoia.  As you can see, most of these speak to the “manic” side of bipolar I disorder, which involves “excitement of psychotic proportions” as well as hyperactive, disorganized behavior.

As Andrea’s interview yesterday revealed, treating bipolar I disorder can mean treating both mania and depression simultaneously.  Further, our patient-reported data shows that the two prescription medications she takes currently – lithium for mania and Lamictal for depression – are among the most commonly prescribed treatments for bipolar I patients, along with individual therapy and Seroquel.  How well do these treatments work?  Click on each treatment name to read our patients’ evaluations of their effectiveness, side effects, cost and more.

Finally, much can also be learned directly from the experiences our patients share on their profiles, treatment evaluations or forum posts.  We leave you with several patient quotes from our Mental Health and Behavior Forum that help to fully illuminate life with bipolar I disorder:

  • “My manias last for about three to four months and are followed by depressions that tend to also last three to four months.  Mine is the classic form of the disease with manias characterized by hallucinations, grandiosity, and impulsivity, and depressions characterized by fatigue, guilt, and somatic concerns.”
  • “The condition is every part of me as anything else. My choice to treat it arises from the consequences of living with bipolar in a non-bipolar world and not because I am broken and in need of repair. Bipolar “disorder”, well, whose order am I in disarray?”
  • “Now I’m a little manic.  I know what you mean about relentless depressions.  I have those too.  At the other end of the spectrum, I become psychotic.  That’s the part that really frightens me and usually lands me in the hospital, or worse.”
  • “A month ago, I truly would have been leveled by all this drama.  I’ve come quite a distance in a short period of time.  You guys give me such strength.  I know that with your help, I can make it through life’s ups and downs while keeping mine under control.”

If you’ve got something to share about bipolar I as well, join the conversation today!


American Diabetes Month Kicks Off with “T1 Day”

Posted November 1st, 2011 by

As we mentioned in our blog about the “Calling All Types” campaign last week, November is American Diabetes Month.  Today, November 1st, is also “T1 Day,” a new event sponsored by the Juvenile Diabetes Research Foundation (JDRF) to raise awareness about type 1 diabetes (previously known as juvenile diabetes), which is often diagnosed in children, teenagers and young adults but may occur at any age.

November 1st is "T1 Day," An Event Designed to Raise Awareness of Type 1 Diabetes

Affecting 5% of those with diabetes, type 1 diabetes occurs when the pancreas does not produce any insulin, a hormone that is needed to convert sugar, starches and other food into energy for the body.  As a result, people with type 1 diabetes are “insulin dependent,” meaning they must take insulin in order to stay alive.  This requires testing their blood sugar and taking insulin (via injection or an insulin pump) multiple times per day for the rest of their lives.

In contrast, type 2 diabetes patients do produce insulin.  The problem is that it’s either in insufficient amounts, or the body doesn’t respond to it as it should.  Thus, oral medications, supplemental insulin and/or lifestyle modifications such as diet and exercise may be prescribed to help control blood sugar levels and prevent hyperglycemia (high blood sugar), which is a major cause of serious diabetes complications such as blindness, kidney failure and amputations.

Learn More About How You Can Get Involved with American Diabetes Month

Here at PatientsLikeMe, there are currently 386 patients reporting type 1 diabetes, with 63% female and 37% male.  Some of the most commonly reported symptoms include blurry vision, urinary frequency and excessive thirst, while some of the most commonly reported treatments are Insulin Glargine, Insulin Lispro and Insulin Aspart.  Collectively, our members have submitted 45 evaluations of these three insulin types, sharing their experiences with dosage, side effects, cost, adherence and more.

Confusion about the differences between type 1 and type 2 diabetes – the latter being far more prevalent as well as strongly linked with the obesity epidemic – is a frustration for some of our type 1 members.  As one member writes in our forum:

“As a type 1 diabetic, I am sick of people giving me advice or ‘cures’ that are for type 2.  Almost all advertising in Canada is directed towards type 2 diabetics and how the disease is on the increase due to poor eating habits and obesity, weight problems, whatever.  So when people hear I am a diabetic, I get: ‘Should you really be eating that dear, diabetics should not eat sugar.’  I look at them and think of the blood test I just did, which let me know that I needed some sugar.”

Indeed, as the JDRF states on its Myths and Misconceptions page, “While obesity has been identified as one of the ‘triggers’ for type 2 diabetes, it has no relation to the cause of type 1 diabetes.  Scientists do not yet know exactly what causes type 1 diabetes, but they believe that both genetic and environmental factors are involved.  Eating too much sugar is not a factor.”  Also, as the patient quote above illustrates, patients with type 1 diabetes must always be on alert for insulin-induced hypoglycemia (low blood sugar), which requires an immediate intake of sugar to avoid fainting and other complications.

For a deeper glimpse into life with type 1 diabetes – which is diagnosed in more than 15,000 children and 15,000 adults each year in the US – tune in to our podcast interview with Sarah Taylor, a registered nurse and friend of the company who was diagnosed with type 1 diabetes at the age of nine.

To learn about other American Diabetes Month events, check out this great preview on the blog Diabetes Mine.  And if you’re a diabetes patient, don’t forget to share your thoughts and stories at CallingAllTypes.com.


Coping with Nerve Sensitivity

Posted June 4th, 2011 by

Do you suffer from nerve sensitivity – or a feeling akin to pins and needles?  Known clinically as paresthesia, this uncomfortable sensation if often described as a tingling, pricking and/or creeping feeling.  For some people with nerve sensitivity, it can be painful for clothing to touch your skin.  Although there is no objective causes, nerve sensitivity is usually associated with injury or irritation of a sensory nerve or nerve root.

At PatientsLikeMe, where more than 130,000 patients are sharing their experiences with all types of treatments including prescription drugs, over-the-counter drugs and supplements, 36 patients current report experiencing nerve sensitivity.  Their primary health conditions range from multiple sclerosis (MS) to fibromyalgia to complex regional pain syndrome type 1.  What can we learn from their experience?  Quite a bit, actually, thanks to PatientsLikeMe’s unique data-sharing platform.

For example, this symptom has a major impact on daily life, as more than two thirds rate their nerve sensitivity as severe (12 patients) or moderate (18 patients).  What are they doing to cope?  Some of the commonly reported treatments for nerve sensitivity include Potassium, Gabapentin, Neurontin and Zonisamide.  (Click on each treatment name to see how our patients rate the effectiveness, side effects, cost and more.)

JOIN PATIENTSLIKEME TODAY

Are you living with nerve sensitivity?  Don’t go it alone.  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.

Join PatientsLikeMe


How Much Do You Know About Autism and IBS?

Posted April 22nd, 2011 by

“When you have a child with special needs, you really start to feel like you’re constantly the squeaky wheel as you advocate for your child. After a while, you start to wonder…’is it me?’ But I’ve already found several other parent advocates who are going through the same thing.”

Autism Caregiver

It’s Autism Awareness Month as well as IBS Awareness Month! Now that PatientsLikeMe has opened its doors to any patient with any condition, it’s amazing to see how many patients have joined our site in such a little amount of time. As we continue to add new members and conditions daily, helping us to expand beyond our recent milestone of over 100,000 members, here are some facts about autism and irritable bowel syndrome (IBS) from our members.

Autism

Membership

  • PatientsLikeMe already has over 100 members with autism, even though autism patients and caregivers could only join PatientsLikeMe starting at the beginning of April.

What are the top treatments?

What are the major symptoms?

IBS

IBS

Membership

  • PatientsLikeMe already has over 270 patients with IBS, even though, like autism, IBS patients could only join PatientsLikeMe starting at the beginning of April.

What are the top treatments?

  • IBS patients are using more than 600 treatments, including prescription drugs, supplements, over-the-counter medications, medical devices, lifestyle modifications, therapies, etc.
  • The top lifestyle modification reported by our IBS patients is Rest, while Stretching is the number one exercise cited.
  • The most widely used prescription drugs reported by IBS patients are Duloxetine (Cymbalta), Pregabalin (Lyrica) and Tramadol (Ultram).

What are the major symptoms?

PatientsLikeMe member afleishman


Learn from Others with BVVP (Positional Vertigo)

Posted March 5th, 2011 by

BVVP (more commonly abbreviated as BPPV) stands for benign paroxysmal positional vertigo.  A disorder caused by inner ear problems, it is characterized by repeated episodes of positional vertigo that are triggered by repositioning or moving the head.  This produces a spinning sensation that disorients the BVVP/BPPV patient.

At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with conditions, symptoms, treatments and more, 44 patients report experiencing BVVP, with 22 of them officially diagnosed and 5 of them indicating that it’s their primary health condition.  To give you further insight into this community, the most common age bracket reported is 40 – 49 years of age, and 76% of our BVVP patients are female.

What treatments have PatientsLikeMe members tried for BVVP/BPPV?  The most commonly reported treatment is the Epley Maneuver, a non-invasive outpatient procedure developed by Dr. John Epley that involves holding a position that triggers vertigo until the vertigo subsides.  Here’s how one patient evaluates this procedure.

“The Epley Maneuver is done in the office, under the care of a professional. It is no fun, at all! I did NOT enjoy it! I survived it on two separate occasions. It doesn’t seem to have helped my problem.  In between my Epley’s, I was to vibrate my head with a personal massager, above the affected ear, twice a day for three days. And then the Epley was repeated. Like I said, it didn’t work. And I did that that for six days, my head was so sore! It was better, but I still can’t drive, I get dizzy and I fall over.”

If you’ve tried the Epley Maneuver or another treatment for BVVP/BPPV, we encourage you to share your experiences to help other patients.  PatientsLikeMe’s unique data-sharing platform allows you to share detailed data about all types of treatments, interventions and lifestyle modifications that have helped you or simply had no effect.

JOIN PATIENTSLIKEME TODAY

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.

Join PatientsLikeMe


The Choices Patients Like You – and Like My Mother – Face

Posted February 14th, 2011 by

Patients like you with life-changing conditions have to make choices every day, just like anyone else. These choices, however, typically have more at stake than how to RSVP to a party or even whether to walk away from an “underwater” home. For patients like you, your lives may be at stake.

I have watched my mother deal with three different types of cancers for more than 25 years, and the choices she had to make for me and my siblings to be successful were stark. As a single mother with a doctorate and two master’s degrees, she had to take jobs that paid less because cancer limited her energy. She took on enormous debt because she wouldn’t let her illness stop her from giving her children a private school education. Those choices started from physical and emotional hardship, then led to economic hardship.

Patients like you – and like my mother – have conditions you didn’t ask for, and your ability to keep a job and maintain economic stability isn’t just based on your talent or training, but also in your management of your conditions. Brought on by infection, age, genetic pre-disposition or unknown causes, these conditions factor into every choice, every decision—and in my mother’s case, which job to seek. We all make choices each day, but patients like you often have to choose between living well and just living.

One of the most important choices for patients like you is how to treat your disease. With your health care team, you try to make the best choice with the given information. The problem is information is scarce, untrustworthy or impersonal. That’s right, impersonal. What is a miracle treatment for one person could land another in the hospital. At PatientsLikeMe, we try to shine light on the information that can help each of you reach your best outcome. This is why we don’t just provide aggregate information, but allow you to access the profile of a person who is taking a medication to see if that person is “like you.”

The figure below speaks to the choices patients like you have to make about your treatments in a world with imperfect information. The chart depicts thousands of patient evaluations of efficacy and tolerability among major therapies across our 22 represented conditions. What jumps out immediately? That treatments for HIV and Parkinson’s are both more effective and easily tolerated than others out there for other diseases. Hundreds of millions of dollars have been devoted to research in those areas, and it’s paid off. Many believe Parkinson’s has a cure in sight, and HIV has, in less than 30 years, become a manageable chronic condition rather than a death sentence.

Efficacy vs. Side Effects

But what if you have other conditions? You are clearly making a choice between efficacy of the medications and the side effects that come with them. While aggregated data is great for directional insight, PatientsLikeMe is designed to let you drill down deeper. You can ask each person taking the treatment how it works for him or her. Why? Like everyone, you trust people like yourself who are going through or have gone through the same experiences. Only patients with similar situations can give you specific insight into what tradeoffs need to be considered when potentially trying a new medication. How will it affect my sleep? Is there daytime fatigue or “down time”? Can I operate heavy machinery? Will this treatment impair my ability to work in my profession?

These are the questions many of you are asking. These are the choices you make every day. My mother made her choices and has lived to see the fruits of her sacrifice. If we at PatientsLikeMe are going to help each of you answer the question, “Given my status, what is the best outcome I can hope to achieve, and how do I get there?”, then we have to continue to show the benefits of openly sharing information with each other. We have to excel at illuminating the real-world efficacy and risks of all kinds of treatments, and we have to help you connect with patients like you in a way that you get personal answers to your questions.

The more data you choose to share, the more we can all make the world of treatment information less imperfect and more personal. Simply stated, we’re all in this together.

PatientsLikeMe member dwilliams


One for All: A Cross View of Patient Sharing

Posted February 4th, 2011 by

With more than 82,000 patients on PatientsLikeMe, there’s a lot of information being shared with one another.  Last month, we highlighted how your sharing affects the experience of many on our site (One For All series).

commgraphicToday, we continue that theme by taking a look at information being shared across all of our communities that many of you may have in common. Can you guess how many of you are on similar treatments or experiencing similar symptoms even though you are in different communities? Read on to find out.

DID YOU KNOW…

  • Of the members who have reported their age, more than 8,000 of our of you have indicated you’re under 30-years old and more than 12,000 are 55-years old or older.
  • Approximately 31% (or 27,013) of patient members across all communities experience depression.

How are you treating your condition?

What are your major symptoms?

What are you talking about?

  • Some of most frequently “tagged” topics in the forum include research, symptoms (e.g., pain), SSDI (Social Security Disability Insurance), coping strategies and side effects.

A special thank you to all of our members for continuing to share your data and experiences to help others just like you.


Sharing and Learning with PatientsLikeMe

Posted December 22nd, 2010 by

In December community newsletters (launched earlier this week), we asked some of our members to think about what they’ve shared and compared in 2010.  Below are highlighted answers from each interviewee across all nine community newsletters.  Thank you for your contributions.

We also want to thank all of you who have contributed to the 90 newsletters we ran this year, including the newly launched ones in our Epilepsy and Transplants communities.  Finally, a special thanks goes out to our newsletter writer, Amy Morton, for pulling these together every month.

To review all of our newsletters, you can visit our archives page here.

* * *

2166 (Amy)

How has PatientsLikeMe helped you learn and share this year?

tommymkr (Tommy Maker – ALS Community)

PatientsLikeMe has provided me with new friends-people who are experiencing the same problems as I am. I’ve learned that there isn’t a single question that won’t get a vast myriad of answers from the community. I’ve learned that we’re all very different people, and I’ve learned we don’t always agree.  I’ve learned that we all care enormously for each other and are very eager to help those who find themselves in the same boat as we are. But most of all I’ve learned that I am not on my own.  I’m not the only one facing a bleak future and not the only one who is able to appreciate what he has at the moment.

cobe (cobebu8 – MS Community)

I really like it here in that I can keep track of all my meds with their side effects, etc.  Plus I like it that I can list symptoms and have a history of all of it to review and learn from and share with my doctors. I hope that my input on meds, therapies, etc., helps other people. It is good not to be alone.


mtnlady (mountain lady – Parkinson’s Disease Community)

It has given me the experience of reading about others who are in situations similar to mine.  It has shown me that I am not alone.  I love reading the newsletters and the comments from other readers. It also helps to keep me up-to-date on any new suggestions or treatments.

Also, I became acquainted with someone online through PatientsLikeMe.  We actually live in the same town, both work in the field of Education and have had Parkinson’s for the same length of time.  Getting together with her was a pleasure, and she introduced me to the idea of meeting with a support group, which I had never done before.

ellie
(ellieGADsufferer – Mood Conditions Community)

It is invaluable. I find the Symptoms and Treatments areas so helpful. I have learned (from genuine people who are taking these meds) that some of my “quirky” side effects and sufferings from the meds I take can and do happen to others and are not imaginary.  (My general practitioner and Consultant just brush the list aside and shrug their shoulders).

I have learned that I am not alone with my illnesses, which is good to know, and I have also learned that there is “light at the end of the tunnel.”  I try to keep my profile as up to date as possible in the hope that it will be helpful to at least one or two members. I rate my Daily Mood [now called InstantMe] at least five days per week and always complete my Mood Map, again for the same reasons.

Well done PatientsLikeMe and its members. Keep going, you are doing really good work and long may it continue.

andrew (andrewn78 – HIV Community)

I love organization and having PatientsLikeMe help me to organize all of my medical information. I would like to have an ability to log simple notes on the PatientsLikeMe profile so every time I go to my doctor I can make some general notes (if needed) for that visit on my experience and what was covered with my provider.

(Note that all users can now use InstantMe to add notes/annotations to your Doctor Visit Sheet)

nates (Nates-Sweetpea – Fibromyalgia/CFS Community)

PatientsLikeMe has been such an encouragement to me, not only in what others have given to me through sharing their stories, but also by opening up a window for me to be an encourager also. I love the newsletters that are super reminders of how to not get off track, and also how to be good to myself.

kg
(kg10043 – Epilepsy Community)

I think I have been pretty good at sharing, but this has been one new method, especially with some of the health issues with others facing similar situations. In the past I have answered questions for people who had their first seizure or just questions, but with this site, I am able to communicate with others who have had the same operations, take the same medications, etc., and really understand things better (from a different perspective).

kidneygirl (kidneygirl1198and0505 – Transplants Community)

PatientsLikeMe has helped me so incredibly much!  I’ve made so many friends that I thank God for every day.  It’s just like, no matter what you have or haven’t had transplanted, whichever organ you need or have, everyone on here understands you and what you’re going through.

I just really hope that people can say that about me.  It took me awhile, but no one is alone out there.  Everyone is going through their own personal struggles.  I just want everyone to know I am all ears!

PatientsLikeMe member lscanlon


Treat Us Right: Mapping What Patients Think About Medications

Posted December 15th, 2010 by

One of the ways we can better understand whether you, as patients, are having a positive or negative treatment experience is to “listen” to the conversation you’re having in our forum.  By understanding whether you are having a positive, negative, or neutral experience with a particular treatment you are taking or are considering taking, we can measure the impact of different events on the overall community.

For example, in 2008 we measured the impact on our multiple sclerosis community of a corporate announcement by Biogen about a serious and sometimes fatal side effect of Tysabri (occurs in about 1 in 1000 patients).  The results revealed that patients were indeed frightened by the announcement, but these patients were also so positive about Tysabri’s benefits, that most planned to continue taking the medication regardless of the risk.

Visualizing Perception of Sentiment
We visualize movement in your sentiment via perceptual maps and longitudinal bar charts.  The perceptual map here shows how patient perception (indicated via forum conversations in one disease community) is moving regarding different medications over four periods of time. (Note: each color represents one medication;  the shading represents the change of perception over time with the darkest shade being most recent).  From period to period, it becomes clear which medications you perceive work the best (i.e., Medication D for efficacy) and those that have the most side effects (i.e., Medication A for safety).

chart1

A stacked bar chart graph is a way to further break down the sentiment.  For example, the chart below shows the volume of posts about Medication E’s perceived efficacy, whether positive, negative, or neutral by month over time.  This visual allows us to evaluate if certain events impact your perceived efficacy of a particular medication; to create this graph, we look both at volume of posts (spikes) as well as proportion of posts by sentiment (colors).

chart2

Why is that important?  Because studies have shown that people who stay on their medications long term get the best health outcomes.  By measuring patient sentiment of discussions, we can predict if patients may discontinue taking their medications and why.  Knowing that, along with the information you share as part of your profiles, helps in research of how outcomes change over time and the impact of peer influence.

These methods are also used in creating our PatientsLikeMeListenTM service for industry partners.  Their interest is in understanding aggregate perceptions and what influences patient behavior so that they can keep patients like you on medication.  As part of this service, we show them which types of patients are most likely to stay on medication appropriately and which ones might be better off changing medications.

Our goal in analyzing patient sentiment overall and providing the PatientsLikeMeListenTM service for industry partners is to amplify your voice to anyone listening:  Treat Us Right.

PatientsLikeMe member dwilliams


One for All: Interview with Diamondlil58 (Welcomer of 15k Patients)

Posted December 9th, 2010 by

We’ve been learning about how connected our patients are this week in our blog series called “One for All.”  In the first two blogs by Jeff Cole, we read (and saw through cool graphics) how some of our members are initiating an unparalleled universe of dialogue.  Today, we sit down with one of those members, Diamondlil58.   A true “diamond” in the MS community, she has left more than 16,000 comments to  welcome other members and get conversation started. Here’s our interview with one of the founders of our PatientsLikeMe “Welcome Wagon,” Diamondlil58.

liz1 (Liz) How and why did you start welcoming people? 
diamondlil38 (Diamondlil58) I was welcomed to PatentsLikeMe by two lovely ladies – JHCamero and Greeneyes.  Their messages made me feel welcome.

I wanted to give back to the MS Community.  I didn’t feel that I knew enough about the disease and the effects it had on others to offer advise in the forum.  But, greeting people is something that I felt comfortable doing.

liz1 (Liz) What type of responses do you get from people you welcome?
diamondlil38 (Diamondlil58) I have received many nice replies from new patients.  Some tell me their experiences,  others ask questions or request help setting up their profile page.  Some want to know my view on therapies and treatments.  I continue to welcome because it has been rewarding to me.  I understand first hand how scary the MS diagnosis can be; how friends and family can’t possibly understand what it’s like to feel the way we do; how we can be perceived as lazy; or the fear of parking in a handicap parking spot and hoping no one verbally attacks us.  Welcoming give others an opportunity to view a profile and helps them see what they can do with theirs.
liz1 (Liz) Do you keep in touch with people you welcome?
diamondlil38 (Diamondlil58) I do keep in touch with so many people that I have welcomed through this site.  Some through Facebook, others in email.  I’ve even met several in the past year or so.  I have built some wonderful friendships here and make more everyday.
liz1 (Liz) What is one thing you’ve learned from looking at new member’s profiles? 
diamondlil38 (Diamondlil58) That we have all different backgrounds.  That we are not all the same but we all share one thing in common and that gives us something to build on to support each other.
liz1 (Liz) Do you feel more engaged with the site and its members as a result of the Welcome Wagon?
diamondlil38 (Diamondlil58) Absolutely!  I wouldn’t do it if it was negative or wasn’t rewarding.  It’s my way of giving back to the MS Community.  I have a great appreciation for the founders of this site, the staff, and the caregivers that join us.  This site has been therapeutic for me in more ways than one, and I am so grateful that I came across it three years ago surfing the internet looking for information on my symptoms.
liz1 (Liz) We’re glad you did too.  Thanks so much for keeping the wagon rolling, Diamondlil58.  You’re an inspiration.

Mental Health Awareness: What do you know about Mood Conditions?

Posted October 15th, 2010 by

In honor of this month’s Mental Illness Awareness Week, here’s a snapshot of what’s happening in our PatientsLikeMe Mood community. Launched in 2008, the community now has more than 18,000 patients. Below are some interesting facts about the community, so please read and share on!

DID YOU ALSO KNOW…screen-shot-2010-10-15-at-33639-pm1

  • You can search for patients under 15+ diagnosis categories, including depression, bipolar, obsessive-compulsive disorder (OCD), post-traumatic stress disorder (PTSD), anxiety, addiction to tobacco, addiction to alcohol, eating disorder and more.
  • In a PatientsLikeMe research study recently published in the Journal of Medical Internet Research, we revealed:
    • 26% of responding mood community members agreed or strongly agreed that using the site had reduced thoughts about self harm
    • 23% agreed they had decided to start therapy or counseling after interacting with others on the site
    • 22% agreed they needed less inpatient care as a result of using PatientsLikeMe.  (See our “Patient Voice” report, video and member interview on inpatient therapy).
  • Members’ experiences on the treatment Amitriptyline was used in an award-winning paper presented at Medicine 2.0 last year.

How are our members treating their condition?

What are their major symptoms?

What are they talking about?

  • Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Lamictal, Lithium, Wellbutrin and Seroqul), as well as borderline personality disorder, coping, anger and journaling.


UCB and PatientsLikeMe Partner to Give People With Epilepsy a Voice in Advancing Research

Posted June 15th, 2009 by

Today is an exciting day for PatientsLikeMe.   In a first-of-its-kind industry-patient partnership, PatientsLikeMe is joining forces with biopharma company, UCB, to launch a new community for people with epilepsy to capture real-world experiences of the disease and help advance research.

The news release announcing the partnership is below.

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BRUSSELS, BELGIUM and CAMBRIDGE, MA–(Marketwire – June 15, 2009) – Biopharma company UCB and PatientsLikeMe, the leading online community for people with life-changing conditions, today announced a strategic partnership to create an online, open epilepsy community that captures real-world experiences of people living with epilepsy in the U.S.

Scheduled to launch in early 2010, this platform will be designed to collect, analyze and reflect information received from people with epilepsy, regardless of their diagnosis, prognosis or treatment regimen.

More…

PatientsLikeMe member dwilliams


Fibromyalgia Awareness Day 2009

Posted May 13th, 2009 by

Did you know that yesterday was Fibromyalgia Awareness Day?

The PatientsLikeMe Fibromyalgia community is growing exponentially with more than 3400+ members just five months after its launch!  Many  of our members are feeling newly empowered by their membership in our community and are attending events, wearing pins and ribbons and taking the time to spread awareness about what it’s like to live with fibromyalgia.

scrn_compare_fibromyalgia

This sharing mirrors the sharing they do on the site. At PatientsLikeMe, members build their profiles by sharing information about their condition, such as symptoms and treatments.  Top treatments cited to date include rest, heating pads, walking, stretching and the drug Lyrica.  The most commonly listed symptom is pain, followed by fatigue, memory problems and lower back pain.  In addition to sharing health information, patient members also share their personal experiences and tips with each other.  In our forum these past few months, patients have discussed all kinds of topics, including finding the right doctor, coping with pain and fatigue and how to explain how they really feel to their friends and family.

With all this sharing, patients are learning more about themselves, helping each other better understand this condition, and improving their overall quality of life. In fact, in a recent survey amongst some of our members with fibromyalgia, 85% of our respondents agreed or strongly agreed with the statement – “I feel better about myself because of the recognition by others at PatientsLikeMe that my condition is real.”

If you are not already sharing and learning with other patients like you, we invite you to join our community here at PatientsLikeMe.

PatientsLikeMe member moakes