146 posts tagged “Awareness”

Epilepsy Awareness Month: The value in helping others

Posted November 6th, 2015 by

It’s November, which means it’s Epilepsy Awareness Month. During our #NotAlone campaign, we shared how PatientsLikeMe member Letitia’s experience on the site helped her feel less alone in living with epilepsy.

Letitia (Letitia81), a member of our 2014-2015 Team of Advisors, explains:

“I enjoyed connecting with others suffering from seizures and exchanged ideas about diagnostic tools such as the 72 hour EGG, treatments, triggers and the like. The most beneficial data that I found on this site was learning about epileptologists and more about epilepsy surgery. Prior to finding out about such a specialists, I continued to use the ineffective treatments given to me by general neurologists for 21 years. After doing some more research on the epileptology, I fired my neurologist and went to see the epileptologist in my area, who was able to perform special testing to accurately diagnose and recommend epilepsy surgery for my condition. As a result, I underwent pretesting last year for epilepsy surgery and after successfully passing all pre-test, I had my surgery (Left Temporal Lobectomy) on August 16, 2012 and have been seizure free ever since! My surgery was very successful and the chances of me having seizures again is very unlikely. I’ve made it my passion to share my story and resources with others who are suffering and/or know someone who is suffering from uncontrollable seizures and epilepsy.”

But Letitia is not alone in her experience with other members of the epilepsy community, and there are many PatientsLikeMe members who understand the value in connecting with and learning from others who understand what they’re going through.

 “Being a member of a meaningful team is time well spent. I can still contribute in some way to the greater good. It means that there are still things I need to do and be a part of despite my challenges. For anyone who has an illness or disability, you have to widen your world to help others. That is what ultimately will help you. When I was at my very worst, my husband told me I needed a new hobby. I was in medical offices 2-3 times a week, and now it is once a month. That is progress I can see!” – Becky (Rebelor), also a member of our 2014-2015 Team of Advisors, who is living with epilepsy.

“I joined [PatientsLikeMe] because I didn’t want to feel alone anymore. Simply put. And I know that I could be helpful with my life experience of having epilepsy to someone else just like me.” – PatientsLikeMe epilepsy member

“I wish I had found [PatientsLikeMe] years ago. It could have been a huge help to me during the worst years. My seizures are now controlled using a mixture of medications. Now I hope to help people who are still in those dark times.” – PatientsLikeMe epilepsy member

Are you living with epilepsy? During the month of November – and year-around – check out what the Epilepsy Foundation is doing to promote epilepsy awareness and help those living with epilepsy.

You can also connect with more than 9,800 others like you on PatientsLikeMe, and share experiences with more than 10,800 others in the epilepsy forum.

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Shining a light on lung cancer

Posted November 2nd, 2015 by

What began as one awareness day back in November of 1995 has grown into Lung Cancer Awareness Month, now in its 20th year, as the lung cancer movement expanded and activities increased. Lung cancer is the second most common cancer in both men and women, but is the leading cause of cancer death in the United States.[1] Although the risk of developing lung cancer is highest in smokers (about 90%[2]), many people who do not smoke develop lung cancer each year.

Luckily, there are plenty of ways for you to get involved and help spread lung cancer awareness throughout the month of November – and year-round.

  • Shine a Light on Lung Cancer: This year’s 7th annual global event, hosted by Lung Cancer Alliance, is taking place on November 5, and is largest coordinated awareness event for lung cancer in the U.S. The lighting of the flashlights in local communities honors survivors and loved ones, and provides hope, inspiration and support for everyone touched by lung cancer. Find the Shine a Light on Lung Cancer event near you!
  • Do your part in fundraising for a cure: Participate in the event of your choice, on your own or with family and friends, and fundraise to support Lung Cancer Alliance or another lung cancer mission of your choice. Don’t forget, PatientsLikeMe will make a donation to your fundraising efforts – and provide team t-shirts – through PatientsLikeMeInMotion. All you have to do is join PatientsLikeMe, get 3 stars on your profile and submit your team details.
  • Take part in local, national or global events: Take part in one of many events hosted by Lung Cancer Alliance, our partners at LUNGevity, or host and attend your own event!
  • Spread awareness through social media: Make a difference in your social networks. Lung Cancer Alliance offers some sample posts to get started.
  • Become a #LUNGFORCEday social ambassador: Launched by the American Lung Association, the LUNG FORCE initiative aims to unite women to stand together against lung cancer and for lung health.

How are you showing your support for those touched by lung cancer this November, or in the months ahead? Share your awareness efforts, and experience with lung cancer, in the PatientsLikeMe forum, and connect with more than 3,380 others living with lung cancer on the site.


[1] http://www.cancer.org/cancer/news/specialcoverage/how-acs-fights-lung-cancer
[2] http://www.cdc.gov/cancer/dcpc/resources/features/lungcancer/

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World Psoriasis Day 2015: Have hope, take action, make a change

Posted October 29th, 2015 by


Back in 2004, a group of patient associations from around the world launched World Psoriasis Day. Conceived by patients, for patients, World Psoriasis Day is an international event that aims to give a voice to the more than 125 million people worldwide living with psoriasis and psoriatic arthritis.

On October 29, the International Federation of Psoriasis Associations (IFPA), its members associations and support groups perform activities internationally to raise awareness of psoriasis and psoriatic arthritis. Each year, World Psoriasis Day has a theme, and this year’s focus is “Hope. Action. Change.”

So how can you get involved and help World Psoriasis Day reach its goals of raising awareness, improving access to treatment, increasing understanding and building unity among the psoriasis community?

Year-round, you can connect with others who understand what you’re going through on PatientsLikeMe. There are more than 5,300 PatientsLikeMe members living with psoriasis, and more than 1,600 members living with psoriatic arthritis. You can also check out some of our past posts on psoriasis, including member interviews (Maria, David, and Erica) and physician Q&As (Dr. Jerry Bagel and Dr. Steve Feldman)

Have hope, take action, make a change, together.

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Raise your hand for Eczema Awareness Month

Posted October 23rd, 2015 by

This month on the blog, we’ve already talked about Breast Cancer Awareness Month, Mental Illness Awareness Week and World Mental Health Day. Today, we’re keeping the awareness going strong by highlighting Eczema Awareness Month.

Eczema (Atopic Dermatitis) may affect more than 30 million people in the U.S. So what is eczema, exactly? It’s an itchy, red rash affecting babies, children and adults, and can appear all over the body. Symptoms often become less severe as children grow older, but sometimes, eczema can actually start in adulthood. There’s no cure for the condition, but in many cases it’s manageable.

As part of this year’s effort, the National Eczema Association launched the #ExposingEczema movement, which aims to start breaking through stereotypes and creating a new public awareness about how eczema really affects people’s lives. Here’s what you can do to be a part of #ExposingEczema:

  • Raise your hand
  • Post a picture of you raising your hand on Facebook, Twitter or Instagram with #ExposingEczema
  • Encourage your friends and family to raise their hands
  • Share your eczema story on Facebook, Twitter or Instagram with #ExposingEczema

Remember, eczema isn’t contagious, but awareness is. There are several other ways that you can get involved during – and after – Eczema Awareness Month, and show your support for everyone touched by eczema.

If you’re living with eczema, remember that you’re not alone. There are more than 900 PatientsLikeMe members living with eczema. Connect with them on the site and share your experiences.

#ExposingEczema, together.

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World Mental Health Day 2015: What does dignity mean to YOU?

Posted October 9th, 2015 by

Mental illness affects people in every corner of our global community. Thousands with mental health conditions around the world can face discrimination, stigma, and emotional and physical abuse in mental health facilities. Additionally, many receive poor quality of care due to dilapidated facilities and lack of qualified health professionals.[1]

The theme for this year’s World Mental Health Day, observed annually on October 10th, and sponsored by the World Federation for Mental Health (WFMH), is “Dignity in mental health” and focuses on how dignity can be provided in all aspects of mental health – from patient care to the attitudes of the general public.

The WFMH’s goal when it established World Mental Health Day in 1992 was public education at all levels of society. Today it’s become the largest and most widely promoted education and advocacy program of the WFMH.

How can you take part?  You can read and share their campaign materials. And on social media, they’ve been asking: What does dignity mean to YOU? #WMHDay. You can share your responses on their Facebook and Twitter. And don’t forget to log in to your PatientsLikeMe community to share there as well.

Defining dignity, together.


[1] http://www.who.int/mental_health/world-mental-health-day/2015/en/

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The highs and lows of bipolar disorder

Posted October 7th, 2015 by

Since it’s still Mental Illness Awareness Week, we thought we’d share some facts on bipolar disorders, found in this dynamic infographic. Read our previous post for more information on how to get involved during this year’s awareness week – and all year long. 

Did you know bipolar disorder is a worldwide condition?

  • In Australia there are around 238,957 people with bipolar disorder.
  • In the UK: 723,248 people.
  • Germany: 989,095
  • Canada: 390,094
  • Iran: 810,038
  • India and China, each have 12 – 15 million people who are bipolar

By the numbers…

  • 5.7 million: number of adult Americans affected by bipolar disorder (or 2.6% of population) today
  • 25: average age for beginning of bipolar disorder
  • 50/50: men and women get bipolar equally
  • 3X: But women are 3 times more likely to experience rapid cycling with B.D.
  • 6: Bipolar disorder is 6th leading cause of disability in the world.

For more facts about bipolar disorder, visit the full infographic. And don’t forget to share your experiences with bipolar disorder with the PatientsLikeMe bipolar community.

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#HelpingWomenNow: October is breast cancer awareness month

Posted October 1st, 2015 by


October is Breast Cancer Awareness Month, which you’ve probably noticed by the annual surge of pink ribbons – but what does it really mean? The yearly campaign to increase awareness of the disease, hosted by the National Breast Cancer Foundation (NBCF), is about encouraging women to have a plan for early detection with its theme of #HelpingWomenNow.

Since 1 in 8 women will be diagnosed with breast cancer during their lifetime and it is the most common cancer among women worldwide, continued awareness and education efforts are vital in promoting the importance of early detection.

This month you can explore one of the several ways to get educated or get involved:

Early Detection Plan
Create an Early Detection Plan and invite others to do the same through their online site or using the mobile app.

Beyond the Shock

Share Beyond The Shock, the NBCF’s breast cancer educational resource, with friends and family. This free and comprehensive online guide to understanding breast cancer is a resource for women who have been diagnosed with breast cancer, a place for loved ones to gain a better understanding of the disease, and a tool for doctors to share information. Here you can learn through a series of educational videos, ask and answer questions about breast cancer and hear inspirational stories from breast cancer survivors.

Fundraisers

Host a Fundraiser to help provide mammograms for women in need. There are many ways to support the NBCF during Breast Cancer Awareness Month.  You can host an event or an online fundraiser, participate in a physical activity, or be a brand ambassador.

And don’t forget to share your own experiences within the PatientsLikeMe community.

#HelpingWomenNow, together.

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Cancer awareness in September: Prostate, ovarian and thyroid

Posted September 29th, 2015 by

September was an awareness month for three types of cancer – prostate, ovarian and thyroid – and the emphasis fell on early detection, something to keep in mind year round.

Man up. Get checked.  #manupgetchecked
This month, the Prostate Cancer Foundation (PCF) teamed up with boxing legend Evander Holyfield for a PSA. The PCF also provides helpful guides including questions to discuss with your doctor.

WhyTeal? #TakeActionNotChances
The National Ovarian Coalition sponsors the WhyTeal awareness month for ovarian cancer. For them, raising awareness and promoting education about this disease is crucial in helping women to earlier diagnoses and supporting survivors – making a difference demands taking action.

Get a Neck Check!
With tips, awareness tools and graphics, and video and audio PSAs, the Thyroid Cancer Survivor’s Association offers enough information for people to stay involved throughout the year.

And don’t forget to stay on top of your own condition – by continuing to add your data and experiences on the PatientsLikeMe site. Every piece of information can help change medicine for the better!

Let’s stay aware, together.

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Tackling brain illness, together

Posted September 4th, 2015 by

Our partners at One Mind are advocating for a better understanding of the brain in general, and they’ve narrowed it down to a single statement:

Our brains need answers.

And that’s why they launched the “Needs” campaign story, underneath the hashtag #BrainsNeedAnswers. Think about it – what does your brain, or the brain of a friend or family member, need? It’s not just about researching better treatments or improving the diagnostic process for conditions like PTS and TBI. Rather, it’s about everybody coming together to share their own experiences with brain injury to help raise awareness and increase general knowledge about brain health. Tankmartin, a PTS member of PatientsLikeMe, is the centerpiece of the campaign. Read what he had to say:

If you’d like to participate in the #BrainsNeedAnswers campaign, visit One Mind’s website to learn more about how you can make a difference. And if you’re living with PTS, TBI or another mental health condition, reach out to others like you in the PatientsLikeMe community and find the answers to your own brain questions.

Don’t forget to share this post on Twitter and help spread the word for #BrainsNeedAnswers.


Food for thought: August (diet) edition

Posted August 12th, 2015 by

Many mothers have told their children “you are what you eat,” but some PatientsLikeMe members have taken that idea one step further and are using their diets to try and manage the symptoms of their conditions. People have been sharing about everything from gluten-free to vegan diets – check out what some people said in the conversations below:

“I truly believe, after 50+ years of fibromyalgia symptoms ranging from pain and depression to migraines, irritable bowel, and low thyroid, that the biggest help of all is to watch my diet, get in lots of fruits and vegetables, and limit sugar and alcohol. I supplement my fruits and veg intake with a whole food based supplement. This has allowed me to reduce medication to thyroid supplementation and a very occasional sumatriptan.”
-Fibromyalgia member on her “detox” diet

“My diet is greens, beans, nuts and seeds. Favorites are kale, spinach, cucumbers, tomatoes, carrots, celery, cauliflower, broccoli, sweet potatoes, black, pinto and kidney beans, lentils, black-eyed peas, cashews, almonds, peanuts and pistachios, flax and pumpkin seeds. I also have occasional sweet potatoes, apples, oranges and watermelon. Grains are consumed about once a week and are usually Farro or Quinoa.”
-Diabetes II member on his vegan diet

“With all my meds and other things I take for depression and the DBS, I can’t say that a gluten-free diet has been particularly whiz-bang helpful. However, I think it may have slowed my symptoms or made me feel better than I should.”

“I am also trying to stay as gluten-free and sugar-free as possible. It is a daunting exercise each day, but may be worth it long-term. I believe that diet plays a huge role in all disease states. All we can do each day, realistically, is take one day at a time and note any positive changes in our PD symptoms to gauge how we are benefitting.”
-Parkinson’s members on their gluten-free diets

If you missed our other Food for Thought posts, read the previous editions here.

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Getting ready for psoriasis awareness

Posted July 31st, 2015 by

Image courtesy of the National Psoriasis Foundation

Tomorrow is the official start of Psoriasis Awareness Month. The National Psoriasis Foundation (NPF) wants people with psoriasis to know they are not alone: Over 7.5 million people in the U.S. have been diagnosed with the condition, and more than 4,800 people with psoriasis are sharing what it’s like on PatientsLikeMe.

What does psoriasis look like? It’s a skin condition caused by unknown factors, and most people have red, itchy, scaly patches, especially around their knees, elbows and scalp. Psoriasis IS NOT contagious, yet people living with this skin condition often experience stigma when others notice their symptoms.

The NPF has a calendar full of events to create awareness about treatments, and offer support for the psoriasis community. Visit their website to learn more about what’s going on in your city or town. You can join “Team NPF” to participate in a walk, run, or other fund-raising event near you.

During Psoriasis Awareness Month, check out PatientsLikeMe posts on psoriasis, including the results of our “Uncovering Psoriasis” surveys, patient interviews with MariaDavid and Erica, and learn what doctors Jerry Bagel and Steve Feldman have to say about psoriasis. And if you’re living with psoriasis, don’t forget to connect with the community at PatientsLikeMe.

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Hartfell shares about her PatientsLikeMeInMotion™ experience

Posted July 29th, 2015 by

PatientsLikeMe members hail from around the globe, and recently, 63 people gathered on the coast of Scotland for a walk to raise awareness of IPF and help people with IPF through Chest Heart & Stroke Scotland. The coolest part? The event was organized entirely online by PatientsLikeMe member Hartfell, and through the PatientsLikeMeInMotion™ program, everyone was excited to get out there and hike. Here’s what she had to say:

“My experience with being diagnosed was quite complacent, as I had never heard of idiopathic pulmonary fibrosis (IPF). But when I read about it, it was a big shock. I found PatientsLikeMe online and was so glad because there was so much information and I was able to communicate with people with the same illness. I decided to organize a sponsor walk 5 months after I had been diagnosed to raise awareness of IPF. I have been a keen hill walker (hiker) for 23 years, and I organized a coastal walk at Kippford, with 3 levels of walks to cater to all abilities. We had a fantastic day with weather views and company and we raised £1,453.68 ($2,268.44), which was brilliant. The money went to Chest Heart & Stroke Scotland, which included my donation from PatientsLikeMe. There were 63 walkers that took part that day, ranging in age from 7 years to 85 years old. I would like to thank PatientsLikeMe for pointing me in the right direction to organize this event and help raise awareness. The event went so well and was enjoyed by all!”

If you’re unfamiliar with how PatientsLikeMeInMotion™ works, check out our guidelines – we sponsor 3-star members (super health data donors) who form teams and fundraise with their local nonprofits. And these advocates receive a donation, free team t-shirts and more!

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Chris Hannah, founder of CHSG, talks cluster headaches, clinical trials and more

Posted June 29th, 2015 by

In the beginning of June, we posted about National Headache and Migraine Awareness Month, and today, we’re continuing the conversation with Chris Hannah, the founder of Cluster Headache Support Group (CHSG). He recently sat down for a PatientsLikeMe blog interview, and he spoke at length about everything related to cluster headaches. Below, read what he had to say about PatientsLikeMe, new drug treatments for cluster headaches and his own personal experience with “the worst pain he has ever felt.”

What do you feel is the most important information people should know about cluster headaches vs. other types of headaches?

First and foremost, if you are a cluster headache sufferer, it is important to know that you are not alone. It may seem that way since so many have never even heard of it and often mistake it as just another name for a regular headache. It is actually one of the most painful conditions known to medical science (you can Google that). It’s also not a form of migraine, it is a primary headache disorder but is quite different from migraine in many ways, especially given its odd periodicity where sufferers will have attacks at the same time of day, even the same time of year, over and over again. The pain is excruciating, typically centered around the eye on one side of the head. It also is accompanied by parasympathetic nerve response, causing tearing of the eye, eyelid drooping, running or blocked sinus, and ear ringing. It is quite disorienting when it occurs, and may occur 8 or more times in a single day lasting from 30-90 minutes typically. An attack may also be triggered at any time by consuming alcohol, chemical or perfume smells, second-hand smoke, and many foods.

For those who know someone diagnosed with cluster headache, please know that they are dealing with an insidious and debilitating condition. They are most likely under the guidance of a highly skilled neurologist who specializes in headache disorders. It may be hard for them to socialize as they did before onset, even with family and close friends, because they fear having an attack in public. Where migraineurs can lay their head down, cluster headache sufferers are unable to stay still, often including odd behavior like slapping their head or walking in small circles. This is not a conscious choice, rather the body’s way of dealing with the intensity of the pain. Please give them space but also your compassionate support. They are not looking for things to try that you may have heard about. They are probably experts in all options available to them as is the case with many chronic pain conditions and rare diseases.

How do you feel CHSG.org members might also benefit by becoming members of PatientsLikeMe?

I think one of the key benefits of PatientsLikeMe is codifying anecdotal data that all too often gets lost in the daily dialog of our support group. I think both are still very important, especially in terms of the experience and expertise of the community. Keep in mind that as a global organization, we benefit from the patients of some of the greatest minds in healthcare from all of the major headache centers, along with the many years of experience of many of the members. Although we have that information capital, turning that into quantifiable data for research can be quite challenging. PatientsLikeMe helps us translate each person’s experience with treatments, symptoms, co-existing conditions, and emotional well being into aggregated data that may help clearly identify new research targets, correlations to other disorders or demographics, even the number of patients who suffer similar disorders. It is done so in a positive way, helping the patient with excellent recording and tracking capabilities, even a doctor’s visit report. At the same time, it is helping to accumulate data over time across a diverse patient audience all living with the same disorder. We have a name for this ongoing data collection, reporting, research cycle, called SpiralResearch. We frankly see this collaborative approach as the future path of medical research for rare disorders in comparison to the onerous process of enrolling people in a point in time survey or one-off study that eventually gets published in summary as a document in hopes that someone will take it further, or better, correlate the results across many publications. We think there is an opportunity for greater synergy and insight in the process of continuous data gathering and analysis.

Do you have a personal cluster headache story you’d care to share with the PatientsLikeMe community?

I was in the prime of my career in the pharmaceutical industry when I initially encountered the worst pain I had ever felt. I was at a Harry Potter movie with my family and had to go straight to the emergency room. I truly thought I was going to die. It took six months from that point to get a diagnosis of cluster headache. Unfortunately, due to its rarity, approximately .3% of the population, even healthcare professionals are not all that familiar with it and may have never seen a case. I ended up getting a clear diagnosis first at the Jefferson Headache Center in Philadelphia and a second opinion confirmation from the Cleveland Clinic Headache Center. Until then, I was prescribed opioid pain killers which were largely ineffective. I was having on average 8 attacks per day interspersed with an ongoing baseline headache that made it hard to do anything. Of course, I didn’t sleep much either during that time and actually was housebound for most of the time, like I dropped off the face of the earth. That’s not easy for a man with a family, friends, a high profile job, and an avid golfer and outdoorsman. I had no idea such a thing even existed until I got it myself.

I searched out any and all information about cluster headaches. I found some online communities, but frankly, I did not like them much. They were full of people who were self medicating, self harming, and there were frequent issues of suicide. In fact, cluster headache is nicknamed the “suicide headache” because the effects are so profound on daily living. I decided there must be a better way, especially a way to work within the healthcare system, with pharma and other organizations to improve the quality of life and the resources available to cluster headache sufferers. There remain no preventive treatments specifically indicated for cluster headache although there are some partially effective off-label medications typically prescribed with varying results. For some like me who are chronic sufferers, finding relief is a long path. It is a life-long disorder, incurable currently. We hope to change that. In fact, since starting CHSG in 2010 and incorporating in 2012 as a 501c3 nonprofit organization, we have contributed to several new clinical studies and have even introduced effective treatment options through the headache centers we touch. We also offer a safe, compassionate place for sufferers to learn, share, connect, and engage with activities like our integration of PatientsLikeMe in our overall strategy of spiraling toward a cure.

In your opinion, what are the most promising drug treatments available to people suffering from cluster headaches? What about clinical trials—do you feel people with cluster headaches are good candidates for new drugs still in clinical trials?

We (CHSG) have most recently been working to trial ketamine infusion therapy in the hospital setting with excellent results that will, in fact, be published this year in Cephalgia and Neurology. Ketamine got a bad name from illegal street abuse, but in fact it is an approved, safe, and effective treatment for several neurological disorders, pain, and anesthesia. It is also opioid reducing, meaning it reduces dependency on opioid pain killers for chronic pain. Opiods are highly addictive and in the case of chronic pain conditions, often have diminishing efficacy, so people take more or seek stronger pain relievers. It’s not a viable path. Ketamine, on the other hand, is effective, non-addictive, and has a short half-life in the body. One of the most compelling effects of ketamine infusion therapy is based on neuroplasticity, meaning the brain actually has the opportunity to create new pain pathways, eliminating the “broken” and overexcited pathways common to chronic pain conditions. This is currently my primary treatment.

Another interesting avenue we are pursuing is that of TRP Channel antagonists, specifically TRP V1, A1, and M8. TRP channels are a basic mammalian sensory system that react quickly to certain noxious stimuli, including bright light, chemical smells, certain tastes like the hot in hot pepper, atmospheric pressure change and mild temperature increases. Interestingly enough, these specific stimuli are also the most common triggers for both migraine and cluster headache. There are several candidates currently in the pipelines of both biopharm and pharma as TRP channel antagonists. We do have some work to do to initiate evaluation for cluster headache and migraine and are actively in pursuit.

For many sufferers, there are viable medications that show efficacy at least for a time. Most do have to switch medications throughout their course due to taking relatively high dosage levels of “borrowed” medications primarily indicated for blood pressure regulation, anti-seizure, or serotonin gating. The high dosage levels prescribed for cluster headache introduce many side effects, including heart arrhythmia, low blood pressure, dizziness, severe fatigue, and even confusion. There are also two very good abortive approaches. Sumatriptan injection is effective for most, but limited to no more than 2/day and 4/wk which leaves quite a gap. High-flow oxygen at 12-15LPM also works for many and is quite safe with little side effect. Unfortunately, there is no complete solution yet for most sufferers.

How to you feel tracking or logging on to websites like ours is useful in terms of identifying headache triggers, learning about pain-management therapies, and moving researchers to find treatments for cluster headaches?

There simply can’t be too much real information, but making sense of it can be quite a challenge for the patient, especially in the mix of so much misinformation on the Internet. PatientsLikeMe and CHSG both help distill that information into a quickly understandable and informative format that is based on both experience and research. There is always more to learn, more options to consider, and new information coming from the ongoing collection of data across a wide base of users. Distilling that down into an easily digestible form is what PatientsLikeMe does best, in my opinion. It’s not just about patient tracking and learning about their own conditions, which is quite important; it is also about looking at the data across the patient base and identifying key commonalities and correlations that may not have been visible previously. This information is shared freely with all patients, ongoing. That “informing” process makes better patients, frankly, and puts the knowledge in their hands to help them better manage the dialog with their healthcare provider and others. It builds up the community both individually and as a patient group.

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Let’s talk about men’s health

Posted June 10th, 2015 by

On average, American men live sicker and die younger than American women. Men die at higher rates than women from the top 10 causes of death, and by the age of 100 women outnumber men eight to one1.

Sometimes men just don’t talk about their health problems. Or they might not go to the doctor or for their health screenings as often as women2. This month is National Men’s Health Month and it’s a time to raise awareness and encourage early detection and treatment of preventable disease among men and boys.

There are several ways to get involved and join in the conversation. If you’re looking for a place to start, here are a few ideas:

Join the Men’s Health Forum discussions
Men make up 29 percent of PatientsLikeMe – and 81 percent of these members are sharing about their conditions, tracking their symptoms and connecting with one another in the men’s health forum. If you’re interested in learning more, visit today.

Wear something blue
The Men’s Health Network (MHN) is encouraging everyone to wear blue and share their pictures with the #showusyourblue hashtag on social media.

Research the facts
Learn about Key Health Indicators, common men’s health conditions and leading causes of death on the MHN’s information center.

Check your resources
Here’s a great list of resources and things to do in June, courtesy of the MHN.

Listen to patient interviews
Several men have shared their experiences on the PatientsLikeMe blog – watch Bryan (IPF) and Ed (Parkinson’s disease) speak about their conditions, and listen to David Jurado’s podcast on life with PTS.

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1 Life Expectancy data is from CDC/NCHS, Health, United States, 2013
2 http://www.menshealthnetwork.org/library/menshealthfacts.pdf