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You are a part of this.

It’s a new kind of health book that puts real-world data before authority, and teaches you how to make better decisions for your health.

Inside, you’ll find 7 insight-filled sections to help you navigate your way through Back Pain.

Download your copy here, or read on for more details.
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The Story

Health books are usually written by experts who offer authoritative information about conditions, symptoms and treatments – people who usually don’t live with the condition themselves, but nevertheless tell you what you should do because they know best.

This book is different. It’s based on the real-world experiences of patients. Our approach is not to tell you what to do, but to give you the hard data and the education to help you make your own decisions – to manage your own health. It’s not about doing it alone. It’s about taking control of the process and becoming the primary decision maker when it comes to your health.
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What’s Inside

• Do You Have Chronic Back Pain? How To Find Out
• Getting Diagnosed – What Tests Are Available?
• Feeling Better – How To Find a Treatment That Works
• Taking Action – How To Run a Successful Self-Experiment
• Are You Biased? How To Make The Right Decisions
• The Numbers – What Patients Have Discovered About Back Pain
• Bleeding-Edge Research – Top 5 Breakthroughs From Scientists Around the World

Download your copy here. Happy reading!

CureTogether, an online social health community, announced today the launch of its Autism treatment study. CureTogether will provide an online venue for parents with Autistic children to anonymously share and rate the success of their treatments.

“CureTogether is here to do good; we’ve adopted an open-source philosophy for health research,” said CureTogether co-founder Daniel Reda. “Patients and parents have so much knowledge and expertise to share with each other and with the world.”

CureTogether is interested in collecting information about any and all treatments tried including: Anxiety and Depression medications, Chelation and IV therapies, Glutathione, Naltrexone, EDTA, DMPS, DMSA, Detoxification, vitamins B-12, B-6, supplements, Gluten-Free and Casein-Free Diets, Hyperbaric Oxygen Treatments, Stem Cell Therapy, Play Therapy, Music Therapy, etc.

The CureTogether website also allows patients and parents to add therapies that may not be listed. CureTogether’s goal is to provide data back to the Autism community as to the most effective treatment options. Curetogether is completely impartial and not affiliated with any pharmaceutical or healthcare supplier.

Please visit http://www.curetogether.com/autism to participate in the study.

About Autism
Autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a “spectrum disorder” that affects individuals differently and to varying degrees. There is no known single cause for Autism. According to the Centers for Disease Control and Prevention, 1 in every 110 births in the United States and almost 1 in 70 boys is affected by Autism.

About CureTogether, Inc.
CureTogether is a website that helps people anonymously track and compare health data, to better understand their bodies, make more informed treatment decisions and contribute data to research. CureTogether has been featured in Wired (“Empowering Patients”), The New York Times, The Wall Street Journal, and BusinessWeek (“Innovative”). For more information, please visit www.curetogether.com/blog/about or send an email to press(at)curetogether(dot)com.

You are a part of this, too.

Just like for Anxiety, this crowdsourced guide to depression is based on input from 1000 CureTogether members with Depression.

Inside the book are insights about how to find out if you’re depressed, getting diagnosed, how to find a treatment that is most likely to work for you, running self-experiments, understanding cognitive bias in decision-making, and the latest discoveries from both patients and scientists around the world. The CureTogether Guide will help you navigate your way through Depression.

Download your copy here. We hope it helps!

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You are a part of this.

It’s a new kind of health book that puts real-world data before authority, and teaches you how to make better decisions for your health.

Inside, you’ll find 7 insight-filled sections to help you navigate your way through Anxiety.

Download your copy here, or read on for the juicy details.
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The Story

Health books are usually written by experts who offer authoritative information about conditions, symptoms and treatments – people who usually don’t live with the condition themselves, but nevertheless tell you what you should do because they know best.

This book is different. It’s based on the real-world experiences of patients. Our approach is not to tell you what to do, but to give you the hard data and the education to help you make your own decisions – to manage your own health. It’s not about doing it alone. It’s about taking control of the process and becoming the primary decision maker when it comes to your health.
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What’s Inside

• Do You Have Anxiety? How To Find Out
• Getting Diagnosed – What Tests Are Available?
• Feeling Better – How To Find a Treatment That Works
• Taking Action – How To Run a Successful Self-Experiment
• Are You Biased? How To Make The Right Decisions
• The Numbers – What Patients Have Discovered About Anxiety
• Bleeding-Edge Research – Top 5 Breakthroughs From Scientists Around the World

Download your copy here. Happy reading!

1 in 6 women have vaginal pain in their lives. (Photo: hyperscholar)                 .

I lived with vulvodynia for 10 years.

You’ve probably never heard of it, even though it’s so common. Basically chronic vaginal pain, to put it mildly.

I never had interstitial cystitis, but it’s chronic bladder pain. These two kinds of pain tend to run together. We found a strong association between the two, which independent studies published this year also confirm.

Here’s what we found…
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Women at CureTogether who report vulvodynia are eight times more likely to report interstitial cystitis than women with no vulvodynia. This comes from a study of 724 women sharing data online for the past year.

For details on this finding and how it matches up with other studies, read on…

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Details of the CureTogether Vulvodynia-Interstitial Cystitis Finding

Among 179 people reporting vulvodynia in this study, 59 (33%) reported also having interstitial cystitis, and the remaining 120 specifically reported not having interstitial cystitis.

Among 545 people reporting “no vulvodynia” in this study, 22 (4%) reported having interstitial cystitis, and the remaining 523 people specifically reported not having interstitial cystitis.

This 33% vs. 4% difference represents a statistically significant relative risk of 8.3, with a 99% confidence interval of 4.5 – 15.2..

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Other Vulvodynia-Interstitial Cystitis Research

The importance of this finding is that using only self-reported data, we have found an association between vulvodynia and interstitial cystitis that has previously been explored only in clinical studies such as the following:

1. A 2009 mailed survey to 416 women showed 62% of IC patients had vulvar pain in the past year – http://www.ncbi.nlm.nih.gov/pubmed/19718938

2. Based on a study of 70 women, vulvodynia and interstitial cystitis were found to be clinically correlated, and the authors suggest further research is needed – http://www.ncbi.nlm.nih.gov/pubmed/18038212

3. To rally a cry for more funding into women’s health and these poorly understood, painful conditions, a new alliance of disease foundations has formed, called Overlapping Conditions. Vulvodynia and interstitial cystitis are two of the conditions they are focusing on.

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Self-Reported Data at CureTogether

CureTogether has been called “Yelp for health.” It is a collaboration of people from around the world volunteering to solve real problems in chronic conditions.

People self-report and rate symptoms and treatments for over 410 conditions. The top conditions at CureTogether are depression, anxiety, migraine, back pain, and vulvodynia.

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Take a peek at the top-rated:

- Vulvodynia Symptoms

- Vulvodynia Treatments

- Interstitial Cystitis Treatments

]]> http://curetogether.com/blog/2009/12/10/vulvodynia-sufferers-8x-more-likely-to-have-interstitial-cystitis/feed/ 1 http://curetogether.com/blog/2009/06/17/wayne-cho-depressionanxiety-hero/ http://curetogether.com/blog/2009/06/17/wayne-cho-depressionanxiety-hero/#comments Wed, 17 Jun 2009 23:37:06 +0000 Alexandra Carmichael http://curetogether.com/blog/?p=672 This is an amazing story. A man who suffered from anxiety for many years has run across the entire country of Canada.

His name is Wayne Cho.

His mission is to raise awareness for anxiety and depression, and eliminate the stigma around these illnesses.

His message is one of inspiration and hope.

Here’s what he wrote to his Facebook followers after the successful completion of his run last week:

Dear all,

I have completed the run across Canada to raise awareness of anxiety and depression on June 11, 2009 and I would like to thank you for your support.

Once we have taken the first step, the next step becomes easier.
Keep making small steps and we will reach the world!
I cannot change the world as I am just one man. But with you, we can!
Love led me to this journey. Love gave me strength. Love is you and me.
Love…

With all my heart,
Wayne

Thanks Wayne, for your courage, and for touching so many hearts along your journey.

For all of you out there with headaches, this week is National Headache Awareness Week.

Here are some inspiring campaigns going on (and free stuff!) to celebrate everyone living with tension headaches, chronic headaches, migraines, and cluster headaches.

Wishing you a pain-free week!

American Academy of Neurology Foundation

The AANF has two websites to share for its “Buy a Brain” and BrainMatters campaigns:

https://www.TheBrainMatters.org/buyabrain
Buy a virtual brain online for as little as $5 through the American of Neurology Foundation in honor of a friend or family member. Your virtual brain will then float on the AAN Foundation’s wall of donations. Your donation will make a difference in the lives of people affected by a neurologic disorder because 100% of your gift helps fund vital research into tomorrow’s preventions, treatments, and cures for migraine, and hundreds of other neurologic conditions. You’ll also see Grey’s Anatomy recently picked the AAN Foundation as one of its favorite charities.

https://www.TheBrainMatters.org
TheBrainMatters.org is the American Academy of Neurology Foundation’s official website for patients and caregivers.  TheBrainMatters.org was re-launched in late April and features information on more than 250+ neurologic disorders, including migraine as well as some of the other chronic conditions listed on CureTogether’s website.

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National Headache Foundation

The NHF has these links to share for its Migraine Millions campaign and National Headache Awareness Week:

Since 1993, National Headache Awareness Week (NHAW), sponsored by the National Headache Foundation (NHF) aims to educate people about headache causes, impact and available resources. The theme for National Headache Awareness Week is Chart Your Course to Relief. The NHF is launching “Headache U:  It’s all about YOU,” a new patient education program. The first tool of the program features an online headache care tool called “Chart Your Course to Headache Relief: a personal headache care tool” and can be found on our Web site, www.headaches.org. The tool helps sufferers discover their personal headache patterns and the resources necessary to improve their headache care.

The NHF is also encouraging you to support the Migraine Million campaign. We are rallying one million of the nearly 30 million migraine sufferers in the United States to each donate $1 for migraine education and research. The NHF uses 82 cents of every dollar donated to support the programs and services that we provide to improve the lives of headache sufferers. One dollar at a time, we can improve headache care! To find out more, please visit www.headaches.org, call toll-free 1-888-NHF-5552, or visit the NHF on Facebook, Twitter or YouTube.

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Migraine Research Foundation

The MRF has a new initiative called For Our Children, to support pediatric migraine research. Definitely a great cause to support!

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And the Free Stuff!

Who doesn’t love free stuff? Here are some statistics we’ve gathered, all reported by CureTogether migraine members:

Symptoms

Treatments

Triggers

Related Conditions

And the new Migraine Heroes book, first crowdsourced book on migraines. Tell your friends about CureTogether and ask Alexandra for a free copy!

What’s Inside?

271 people share stories, symptoms, and resources
Surprising data on co-morbid conditions
Detailed comments on treatments by real patients
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Please spread the word!

Blog or tweet http://www.curetogether.org/MHeroes/

All proceeds from Migraine Heroes go to fund the migraine data community at CureTogether.org.

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What People Are Saying

“The best Observations of Daily Life (subjective, ‘real-world’) I’ve seen!” — Jen McCabe (@jensmccabe on Twitter)

“Interesting crowdsourced clinical data.” — Chris Hogg (@cwhogg on Twitter)

“The book is excellent! So many people suffer from this debilitating condition. The information in your book is priceless and will undoubtedly help many.” — Annamarie, a migraine sufferer

“This is great. I am just starting to really appreciate what awesome power CureTogether can have.” — CureTogether member

To order your copy, visit http://curetogether.org/MHeroes/

Thank you for your support!

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.Click on the graph above to see a larger version.

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Here is a list of the conditions found to be co-morbid with migraine in this survey, in order of prevalence.

Anxiety (102 people)
Depression (98)
Back pain (85)
Allergies (75)
Insomnia (69)
Common Cold (69)
Irritable Bowel Syndrome (68)
Acne (61)
Vulvodynia (59)
Acid Reflux (55)
Bladder Infection (49)
Endometriosis (47)
Candidiasis (42)
Vulvar Vestibulitis (38)
TMJ Disorder (36)
Cluster Headaches (33)
Chronic Fatigue Syndrome (32)
Restless Legs Syndrome (32)
Fibromyalgia (31)
Infertility (28)
Body Image Distortion (26)
Aging (25)
Eating Disorders (24)
Interstitial Cystitis (24)
Eczema (22)
Anemia (22)
Neuropathy (20)
Hypoglycemia (19)
Asthma (18)
Adrenal Fatigue (18)
Obesity (17)
Anal Fissures (17)
High Cholesterol (16)
Obsessive-compulsive disorder (15)
PTSD (12)
Binge Eating (11)
Alopecia (10)
Nickel Allergy (9)
Insulin resistance (9)
Pelvic Congestion Syndrome (6)

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Note: Information either on CureTogether’s website or presented in these results does not constitute medical advice. Please check with your doctor before making any decisions about your health.
Also, the 271 people with migraine who contributed the data presented here may not be representative of the general population of people with migraine. There may be a selection bias for people who are more likely to participate in online surveys. A larger study would need to be done using alternate methods of gathering information to reach the population of patients who are not online or not inclined to participate in online surveys. However, the results presented here are informative and suggest what a portion of the migraine population is experiencing.

Another recent mention of migraine was by Josh Bernoff of Forrester Research at the recent HealthCamp Boston. One of his slides, shown below, suggests that migraine sufferers and people with chronic pain conditions are most likely to benefit from and to participate in online social networks (top right quadrant).

On the one hand, it’s great to see so much increasing attention on migraine and chronic pain conditions. On the other hand, there’s still a long way to go.