symptoms

It’s the Season for Seasonal Affective Disorder

Now that daylight savings time has ended, the days are shorter, and before you know it, it’s nightfall.  Has this affected your mood? Seasonal affective disorder (SAD), also known as seasonal depression, is a condition marked by a period of depression that occurs during the same season year after year.  In most cases, that season would be fall through winter (when there is less sunlight), but for some people, SAD can occur during spring or summer. One of the best ways to learn “what’s normal and not normal?” with SAD is to compare your experiences with other patients. There are 446 patients with SAD at PatientsLikeMe, with 85% of them female and 15% male.  A commonly reported treatment is light therapy, or the use of a special light box that exposes you to bright light.  This mimics the effect of natural outdoor light and appears to cause a change in brain chemicals that positively affects your mood.  (Does it really work?  Check out the 27 treatment evaluations for light therapy that our patients have submitted.) What’s it like to live with SAD?  Here are some first-hand reports from members of our mental health community, who answered the question “What are …

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Get “Seizure Smart” for Epilepsy Awareness Month

What does it mean to be “seizure smart”?  It means being knowledgeable about how to help in the event that someone has a seizure in your presence.  Given that one in 100 Americans has epilepsy – and one in 10 adults will have a seizure sometime during their life – this type of basic seizure first aid could help save someone’s life at work, at a restaurant or just walking down the street. In honor of Epilepsy Awareness Month, the National Epilepsy Foundation has created a short interactive quiz that helps you become “seizure smart.”  The goal is to get five million Americans to take and distribute the quiz.  Once you’ve gotten “seizure smart,” you can then help raise awareness and proudly post your completion certificate on Facebook for everyone to see. Got an affinity for posting things on Facebook anyway?  You’re the perfect candidate for the Get Seizure Smart Photo Contest.  Categories include “Funniest or Silliest,” “Most Impactful,” “Best Animal” and more.  All photos must be submitted by November 30th at 3 p.m. EST.  Learn about other Epilepsy Awareness Month activities taking place each day of the month here. At PatientsLikeMe, we have 4,456 patients who report having epilepsy, with 71% …

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American Diabetes Month Kicks Off with “T1 Day”

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. 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 …

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How Much Do You Know About Autism and IBS?

“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? Autism patients are using more than 150 treatments, including prescription drugs, supplements, over-the-counter medications, medical devices, lifestyle modifications, therapies, etc. The top lifestyle modification reported by our autism patients is Applied Behavioral Analysis, while Adapted Physical Education is the number one exercise cited. The …

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One for All: A Cross View of Patient Sharing

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). Today, 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? You report using more than 4,500 treatments for your conditions, including prescription drugs, supplements, over-the-counter medications, medical devices, life-style modifications, therapies, etc. One of the top lifestyle modifications reported by our members is heat avoidance; and physical exercise is the #1 exercise cited. The most widely used prescription drugs reported across communities include Gabapentin (Neurontin), Glatiramer acetate (Copaxone) and Duloxetine (Cymbalta). The top 3 supplements …

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Sharing and Learning with PatientsLikeMe

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. * * * (Amy) How has PatientsLikeMe helped you learn and share this year? (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 …

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

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… 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? Patients are using more than 1700 treatments, including prescription drugs, supplements, over-the-counter medications, life-style modifications, therapies, and more. The …

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Fibromyalgia Awareness Day 2009

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. 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 …

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Sharing to Feel Better

Sharing.  It’s a concept we all learn at a very young age.  Oftentimes reminisced as happening in the sandbox, we think back to our young selves giving up what we hold most dear (in this case, some cheap plastic toy) to allow someone else to benefit from it.  It seems so simple and obvious, but how many toddlers do you know that immediately give into the concept…easily handing over that toy without a moment of hesitation or a slight tug back or possibly the more extreme screaming tantrum?   Over time, what happens is that the more they share, the more they see it puts a smile on their friends’ face, or gives them something in common to “chat” about. You don’t need to be clairvoyant to see where I’m going with this.  Sharing is at the core of PatientsLikeMe, and it’s what makes our communities so special.  More than 32,000 patients are online sharing something they hold dear — details about their health — so that others can see it, learn from it, and dialogue about it.  It’s truly inspirational and something we believe is transforming healthcare as we know it. But sharing doesn’t have to stop there.  From a …

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Announcing the PatientsLikeMe ALS Genetics Search Engine

This month marks the 3-year anniversary of our flagship ALS community.  While there have been so many exciting milestones we’ve reached in that time, we’re always looking at ways to bring new insight to this disease. Today, we’re announcing the launch of our Genetics Search Engine for people with ALS.  Imagine finding other patients just like you, down to the genetic level.  Patients in our ALS community can now do that.  (For patients who don’t see their genetic mutation right now, that’s alright.  They can be the first with that genetic mutation to join our community and share information about the disease.) What does sharing genetics mean for research?  By capturing data on familial ALS patients’ known genetics (such as SOD1 A4V, SOD1 D90A, and VAPB P56S), we can learn more about the cause and effects of every kind of ALS and better our chances of advancing research and finding new treatments. Our goal in launching the Genetics Search Engine (and other upgrades like it) is to help patients find others just like them and enhance our understanding of the phenotype of each genetic mutation (i.e., different causes of ALS have faster or slower disease progression). The Genetics Search Engine is …

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