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Top 10 Conditions at CureTogether: Chronic, Women’s Health

March 4th, 2009 Alexandra Carmichael Posted in Condition Awareness, Random Company News, Research Findings 3 Comments »

What do the 10 most active conditions at CureTogether have in common? As you can see from the chart below, most of them are chronic conditions, and many affect more women than men.* To learn more about what these conditions are, read on below the chart.

picture-151Vulvodynia saw a big surge in data around the release of the crowdsourced book, Vulvodynia Heroes, compiled by CureTogether with input from 190 women. This chart also only captures a representative portion of the data recorded by people with these conditions.

So what are these conditions? While they are all common, some of them are not commonly known, so you may not have heard of them. Here’s a quick run-down:

Vulvodynia

Affects: 16% of women at some point in their lives. That’s 48 million women in the US alone.

What it is: A chronic condition characterized by pain and burning in the vulva without infection or other disease present.  Most commonly reported symptoms are burning, stinging, and/or rawness.  Some women describe the pain as “acid being poured on their skin” or as “constant knife-like pain.”

Source: NVA

Endometriosis

Affects: 5 – 10% of women.

What it is: A condition where tissue similar to the lining of the uterus is found elsewhere in the body. The most common symptom is pelvic pain, which for many women is severe and debilitating. An estimated 30-40% of women with endometriosis may not be able to have children.

Sources: endometriosis.org, Wikipedia

Migraine

Affects: 12 – 28% of people at some point in their lives, women 3 times more affected than men.

What it is: A neurological syndrome involving painful headaches, altered bodily experiences, and nausea. A typical migraine headache is unilateral and pulsating, lasting 4 to 72 hours. Estimated US medical costs for migraine are $1B a year, with lost productivity estimated at $13-17B a year.

Sources: NHF, Wikipedia

Depression

Affects: 8-12% of people at some point in their lives, women twice as affected as men.

What it is: A condition characterized by a pervasive low mood, low self-esteem, and loss of interest or pleasure in normally enjoyable activities. Depression often co-occurs with other conditions like anxiety, ADHD, pain disorders, and PTSD. It also commonly occurs after childbirth.

Source: Wikipedia

Anxiety

Affects: Anxiety disorders affect 16% of people at some point in their lives, women more than men.

What it is: A physiological and psychological state characterized by uneasiness, apprehension, or worry. While anxiety is a normal response to stress, anxiety disorders include panic disorder, OCD, post-traumatic stress disorder, generalized anxiety disorder, and phobias.

Sources: EMBH, NIMH, Wikipedia

Irritable Bowel Syndrome (IBS)

Affects: Up to 20% of the US population, women more affected than men.

What it is: A condition characterized most commonly by cramping, abdominal pain, bloating, constipation, and diarrhea. Most people can control their symptoms with diet, stress management, and prescribed medications. For some people, however, IBS can be disabling.

Source: NIDDK

Vulvar Vestibulitis

Affects: A subset of women who have vulvodynia (see above).

What it is: A chronic condition where pain is felt only in the vestibule, and only during or after contact. Burning sensations are the most common symptom and may be experienced with: sexual intercourse, tampon insertion, gynecologic examination, bicycle riding, or wearing tight pants.

Source: NVA

Insomnia

Affects: 21% of the US population, women 1.4 times more affected than men.

What it is: A symptom of a sleeping disorder characterized by persistent difficulty falling asleep or staying asleep. It is often followed by functional impairment while awake. Insomniacs may be unable to close their eyes or “rest their mind” for more than a few minutes at a time.

Source: Wikipedia

Acid Reflux

Affects: 5-7% of the global population daily, up to 1/3 of Americans.

What it is: A symptom of GERD (Gastroestrophageal Reflux Disease), along with heartburn, that occurs when the lining of the esophagus is exposed to acidic contents from the stomach if the lower esophageal sphincter does not seal off the esophagus from the stomach.

Source: IFFGD

Back pain

Affects: 80% of the US population at some point in their lives.

What it is: Pain in the back, often the lower back. Back pain is one of the most common reasons people go to the doctor or miss work. It can often be prevented or improved with proper body mechanics, regular exercise, chiropractic care, acupuncture, or massage.

Source: Mayo Clinic

*The data presented above reflect only the current population of members at CureTogether, which may not be representative of the larger population of global health citizens. It does serve as an interesting snapshot of the direction that CureTogether members are telling us to take in this great, crowdsourced research project.

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First Crowdsourced Health Book to be Released

February 14th, 2009 Alexandra Carmichael Posted in Condition Awareness, Open Source Research, Random Company News, Research Findings 2 Comments »

vulvodynia-heroes-book-cover-smallCureTogether will soon release “Vulvodynia Heroes: 190 Women Share Their Experiences and Treatments”. It’s the first crowdsourced health condition book, about a condition that affects 16% of women at some point in their lives.

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The book has already received a lot of positive feedback from patients, doctors, health 2.0 enthusaists, and researchers. Here are some recent blog posts about it:

Dealing with Pain and Dysfunction: Vulvodynia Heroes

ScienceRoll: First crowdsourced health condition book by CureTogether

Servicing the Chassis: almost famous

Biogeekblog: crowdsourcing + patient empowerment

Tweet by Jen McCabe Gorman: “checking out first condition specific ‘experiential’ author project from CureTogether = awesome”

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More information about the book can be found here. Please help spread the word by blogging or tweeting this link: http://www.curetogether.org/VHeroes

Thank you and Happy V-Day!

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How to Fight Depression this Winter

January 23rd, 2009 Alexandra Carmichael Posted in Condition Awareness, Research Findings 3 Comments »

If you’re like many people, winter can be a sad time. The grey clouds, cold weather, and long nights contribute to a feeling of the winter blues, or seasonal affective disorder (SAD). SAD is estimated to affect up to 25% of people living in North America*.Depression

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For some people it goes deeper. The Depression and Bipolar Support Alliance reports:
The “lifetime prevalence” of depression is 24 percent for women and 15 percent for men. This means that, at some point in their lives, 24 percent of women and 15 percent of men will experience an episode of major depression.

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As someone who has suffered from depression, I was grateful to see so much activity in CureTogether’s depression community. Depression is the 5th most populated condition here, after vulvodynia, endometriosis, migraine, and irritable bowel syndrome. The most commonly reported symptoms are loss of interest and sadness, each affecting 97% of CureTogether members with depression.

Where it gets most interesting is in the treatments and triggers people report. I’ve compiled the top ways to fight depression below, each recommended by over 50% of members in the depression community (links added by me).
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How to Fight Depression
1. Get enough sleep. This can be hard to do, but focusing on good sleep hygiene can make a big difference.

2. De-stress. It’s easy to forget to make time for yourself, but even 20 minutes a day can be a great gift. The Mayo Clinic gives some advice on relaxation techniques like meditation, tai chi, and massage, all of which can help.

3. Talk to someone. Find a professional counselor with cognitive behavioral therapy techniques, or a good friend with a cup of tea and a friendly ear. Breaking the isolation and getting out there is an important step in beating depression.

4. Move your body. Regular, daily exercise is good for your body, your mind, and your mood. One thing that can help is to keep your shoes beside your bed. As soon as you get up, head right out the door for a brisk walk. It really sets the tone for the whole day.

5. Try SSRI’s. For clinical depression, or if the above suggestions are not effective, you may want to get medical help. SSRI stands for Selective Serotonin Reuptake Inhibitor. Prozac was the first of this class of drugs. There are risks and side effects to SSRI’s, so talk to your doctor.

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Choose one of these things and do it right now.

For more symptoms, triggers, and treatments for depression, and to find a community of people going through the same thing, visit CureTogether. We wish you wellness and happiness.

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*Rosen et al (1990)
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Top 12 Tips for Dealing with Post-Holiday Migraines

December 29th, 2008 Alexandra Carmichael Posted in Condition Awareness, Random Company News, Research Findings No Comments »

Stay hydrated, find time to sleep, and when all else fails, break out the Imitrex. These are some of the most highly rated tips posted in the Migraine data-sharing community at CureTogether (full list below).

Migraine is a disease that affects 30 million Americans. The Migraine Research Foundation estimates that every 10 seconds, someone in the United States goes to the emergency room with a headache or migraine. And with the added stress of the winter holidays, some migraine doctors see a 30 to 40 percent increase in office visits, according to the Headache Institute.

To help manage their migraine pain and find solutions for it, a community of migraine sufferers is growing here at CureTogether (http://www.curetogether.com/Migraine). People are sharing treatments, rating their effectiveness, and writing reviews of their experience. This data is continually gathered into live statistical charts that show how many people have tried a given treatment and how effective it was, on average. One member commented that the statistical data was “very useful”; another said “It’s helpful to see what triggers other people have and what they’ve tried, and a good reminder to focus on avoiding my triggers as much as I can over the holidays, and afterwards!”

The top 12 tips for dealing with migraines as suggested and ranked by CureTogether members are*:

1. Reduce stress
2. Sleep
3. Ibuprofen
4. Avoid dietary triggers
5. Avoid caffeine
6. Imitrex
7. Don’t stare at a computer/screen too long
8. Stay hydrated
9. Neck massage
10. Maxalt
11. Chiropractic treatment
12. Magnesium

For more migraine treatments, visit http://www.curetogether.com/Migraine/_treatment/.

*Please note that this list of tips and all other information on CureTogether.com does not constitute medical advice.

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I’ve tried so many things to ease the pain – A Migraine Story

November 22nd, 2008 Alexandra Carmichael Posted in Condition Awareness, Patient Stories 16 Comments »

Migraine is the third most active condition at CureTogether, and affects over 29 million Americans, with women being 3 times more affected than men. One member shares her anonymous story here, and talks about everything she has tried on her search for relief.
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“I have migraines, and I have tried many things to ease the pain. While I had incidents of migraines as a child, they really started in earnest after my second child was born, over 25 years ago. I’ve listed what I’ve tried below, what worked and what didn’t, and I’d love to hear what worked for others!

* Fiorinal
The first drug I was given was Fiorinal.  Not something I would recommend. It gave me a buzz and had a rebound effect so that the headaches came back stronger after 4 days.

* Allergies
I was tested for allergies to certain foods and other triggers for migraines and I try to avoid those now: beans, corn, mountain ash.

* Biofeedback
I then tried biofeedback which was at the time an experimental process. They monitored the body’s involuntary physical responses: such as breathing, pulse, heart rate, temperature, muscle tension and brain activity through an electrical device that was attached to my finger.  The objective was to see if changing breathing patterns affected the incidence of migraines.  It did not but it did reduce the severity at times.

* Demerol/Gravol
On occasions when I have been immobile from the headaches and vomiting, I have been given Demerol and Gravol injections.  They put you to sleep and eliminate the symptoms.

* Botox
I have also tried Botox since studies show that it assists in migraines.  It’s effective but expensive and who really knows what the long-term effects are.

* Meditation
Now I try to meditate as much as possible and at severe times, I take Gravol followed by Tylenol 3.

* Early detection
The trick is to catch the migraine at the beginning.  If I can, sometimes just some Advil gel will work because it dissolves instantly.  Once a migraine starts there is nothing to be done but endure it.  This can sometime take up to 4 days and is both debilitating and unproductive.

* Acupuncture
It has provided some temporary relief. But be careful who you use.  The first acupuncturist I tried was  a local chiropractor who said he specialized in this practice.  He placed the needles in the wrong places (directly to the head instead of the back of the neck) and immediately triggered a massive migraine.  The second acupuncturist I tried was the head of a college for acupuncturist.  His results were better.

* Herbs and vitamins
I have tried a variety of herbal remedies such as feverfew and vitamin compounds which included B vitamins which are labelled as helpful.  Again not much relief.

* Heat
One of the things that really helps, if you catch the migraine early enough is applying a hot pad at the base of the neck for as long as you can stand it.  It relaxes the neck and, when combined with a strong cup of coffee, seems to work.  But the trick is to catch the migraine at its outset.  Since I get most of my headaches overnight, it is not always easy to catch.

* Selective serotonin receptor agonists (triptans)
They work by reversing the dilation of blood vessels in the head, stopping pain signals from being sent to the brain, and reducing inflammation in the tissues and nerves surrounding the dilated blood vessels. They did relieve the headache almost immediately but had unfortunate side effects of dizziness, violent diarrhea and uncontrollable vomiting.  Needless to say I only tried it once. However, there are now seven medications in this class (Imitrex, Maxalt, Zomig, Amerge, Relpax, Axert, and Frova), so trying more than one can be a good idea.

Just writing about migraines is almost bringing one on. Thanks for reading and I hope it helps.”
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Thank YOU for writing. If anyone would like to share their experience with migraine, please either leave a comment below, or see what others are saying on the CureTogether Migraine page. Wishing you a pain-free day.

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Making Connections

November 11th, 2008 Alexandra Carmichael Posted in Condition Awareness, Open Source Research 7 Comments »

One of the most interesting things we’ve learned so far at CureTogether is how many of the conditions people suggest may actually be related.

Take Fibromyalgia as an example. People who checked off Fibromyalgia symptoms at CureTogether also reported symptoms for the following conditions:
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  • Endometriosis
  • Vulvodynia
  • Discoid Lupus Erthematosus
  • Interstitial Cystitis
  • Irritable Bowel Syndrome
  • Obstructive sleep apnea
  • Pelvic Congestion Syndrome
  • TMJ Disorder
  • Anemia
  • Arthritic Hips
  • Bipolar Disorder
  • Candidiasis
  • Chronic Fatigue Syndrome
  • MCSS
  • Neuropathy

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The fact that Fibromyalgia and these other conditions occur simultaneously in the same bodies is a huge challenge for people living with these conditions, but also an important clue to consider for research.

It’s also helping members directly. One member wrote in to say that it was “interesting” to see TMJ (lockjaw) and endometriosis listed as related conditions. She had both conditions but had never considered that other people might have the same combination or that the two conditions might be connected in some way.

Another example comes from recent news. Researchers at the Fred Hutchinson Cancer Research Center in Seattle reported last week that women who have a history of migraine headaches have a 30% lower risk of developing breast cancer than women who have no migraine history. The link between these two diseases is thought to be the lower estrogen levels that is often found in women with migraines, which also has a protective effect against breast cancer.

Given these examples, it looks like studying the overlap between multiple conditions, what they have in common and where the differences lie, may be a key to finding important insights into how these diseases work and how to treat them. This is step one on a long road of discovery ahead, but what an exciting first step.

If you have one or more related conditions, join in the research process and let us know (anonymously of course!) by posting a comment below or visiting CureTogether’s conditions page and clicking on your conditions. Every connection, every person, every click is a new piece of the puzzle.

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My Tracks to a Cure – one patient’s story

November 3rd, 2008 Alexandra Carmichael Posted in Condition Awareness, Patient Stories No Comments »

Another CureTogether member has courageously come forward to share her experience with the chronic pain condition vulvodynia. She published her story online at Empowher and has agreed to share it here as well.
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“The first day I had sex again I cried. But this time it wasn’t because I was in pain. The uncontrollable tears came from what felt like years of my life lost to vulvodynia and now finally having a chance at a pain-free life. I don’t know how I got through my trial with vulvodynia, there were times I really felt like letting go. It was the most horrible period of my life and now all I want to do is to help other women from ever going through the torture I went through to becoming cured.

It’s hard to say exactly when it all started, as my case of vulvodynia gradually reared its ugly head over time. I began seeing doctors for it probably about 4 years ago, and last year it became so debilitating I could barely get out of bed. My case actually started with what was diagnosed as vestibulitus (the typical q-tip test) with pain only on contact. Later it became full-blown vulvodynia: red, raw, inflamed vulvar pain all over with no cause in site.

I tried everything! I tried the typical and somewhat forced abstinence from any sex for a full year (while I had a boyfriend). Upon doctor’s recommendations I took treatments like Nyastatin, Clobetosol, Lidocaine, Vitamin E, tea tree oil, boric acid, Estrace creams, testosterone ointments, anti-yeast creams, Diflucanzole, SSRI’s, anti-histamines, and antibiotics. I visited other types of doctors, allergists, naturopaths, nurse practitioners, muscle-testers, acupuncturists, herbalists, and nutritionists. I tried natural approaches like fasting/detox with colonics, exercise, and dieting (non-oxalate, raw foods, and elimination diets) for months at a time, as well as regular yoga and meditation. I went to counseling and emotional therapies because some experts will say we’re holding negative emotions inside that exert as physical pain. Every day I meditated, used the power of positive thinking, and visualized my inflammation going away. I even envisioned having sex that felt good (which is really hard to do when you’re in that much pain). I minimized every last ounce of stress from my life. I fanned my “area” dry everyday. I stopped wearing underwear. I tried so hard people thought my problem might be from trying too hard. (But what else can you do when you’re in that much pain?) I was asked to embrace the pain and thank it for sharing, to let go, and everything would get better. Well, that didn’t work either.

Perhaps some of these things were working or could have worked, but the problem was deeper. My vulvodynia was so relentless it couldn’t be resolved until I addressed the real health issue. Through tracking my symptoms everyday and graphing them over time, I was able to identify an extreme hormonal imbalance. I had inadvertently gone into menopause at age 25. I desperately didn’t want to do hormone replacement therapy because I felt the birth control pill (artificial hormones) is what had gotten me into this mess in the first place. With enough time working at my hormones through natural approaches (especially high quality vitamins and herbs), I finally conquered the condition I thought was going to rule the rest of my life.

Since my cure all I’ve wanted to do is help other women avoid going through the painful trials and errors I did. I considered becoming a doctor to fill a dire niche and makeup for all the help I didn’t receive. Fortunately this all could be done on a grander scale. I came across a scientific team of like-minds who endured vulvodynia for more than 10 years and all the effects of such debilitating conditions. It was clear we could have suffered a lot less if we only knew what treatments were working for other people with our specific symptoms and what experiments had already failed. Their vision was to bring patients, doctors, and researchers together to share and learn from each other at a central hub called CureTogether. With research being chronically under-funded, we knew together we could help it go faster in the lab and outside the lab. In addition to treatment reviews, we specifically wanted to open up research to everyone. Symptoms could be tracked over time and evaluated in graphs to find unique problem areas. Patients could have the option to anonymously compare their results and graphs with others to learn even more. The possibilities for discovery were endless. Because of our personal experience with vulvodynia, it was one of the first conditions studied: http://www.curetogether.com/Vulvodynia/

For my entire emotional experience with Vulvodynia visit my blog “The Full Vulvodynia Story” here with EmpowHer. Leave me comments and questions, I’m all ears. You can also find detailed reviews of all the specific treatments from me and others (successes and failures) at CureTogether’s Vulvodynia-Treatment page. Please share your experience too. We’re all in this together, and we can all help each other.”
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Thank you so much for sharing your story!! As always, if you would like to share your story, please write to Alexandra. All stories will be posted anonymously.

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An Endometriosis Perspective

October 26th, 2008 Alexandra Carmichael Posted in Condition Awareness, Patient Stories 12 Comments »

Behind every piece of health data is a person. And every person has a powerful story to tell. We recently invited CureTogether members to anonymously submit their stories, to share their experiences with their conditions. One member wrote in with her story:
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“I’m 39 years old and my endometriosis symptoms began at 13. I was finally diagnosed at 23. In addition to endometriosis, I have multiple other chronic illnesses. My doctors believe many of these conditions are related to my endometriosis. I have participated in endometriosis support groups for 16 years. I have had 6 laparoscopies. I have found alternative medicine very helpful (especially acupuncture)! I have heard many women’s stories: of not being believed by their medical professionals; women who have had their symptoms marginalized or dismissed; women who go from doctor to doctor searching for someone who will truly understand, take them seriously, and help them get relief/manage their symptoms. Many women are not even believed by their own families just how severe and debilitating their symptoms are. There are many wonderful health care professionals out there who treat endometriosis patients. Unfortunately, finding them can be challenging.”
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By sharing stories we realize we are not alone – there are others out there like us, and we can all join forces and help each other. If you would like to share your story, please write to Alexandra. All stories will be posted anonymously.

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Alexandra’s Vulvodynia Story

September 26th, 2008 Alexandra Carmichael Posted in Condition Awareness, Patient Stories 1 Comment »

EmpowHer
After receiving a request from the NVA, I decided to submit my personal experience with vulvodynia to EmpowHer.com. It does get into some detail, not for the faint of heart, so be warned!

I wanted to put it out there to let the 6-14 million women with vulvodynia know they’re not alone, and to give a bit of the story behind CureTogether. I have improved significantly since I wrote those words a few months ago, and am now enjoying a pain-free life. So there is hope for all of you living in pain!

You can read my story here, and I’d love to hear yours too.

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Power Over Pain

September 21st, 2008 Daniel Reda Posted in Condition Awareness 1 Comment »

September is National Pain Awareness month. The Power Over Pain Action Network, a project of the American Pain Foundation, issued this letter to people in pain:

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“On any given day, more people suffer from pain than diabetes, heart disease and cancer combined. Chances are you know someone living in pain – maybe it’s you. Unfortunately, too many in pain suffer needlessly.
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The good news is that with proper pain management, most pain can be greatly eased. You stand the best chance of having your pain properly assessed and treated when you take an active role in seeking treatment and communicating very specifically about your pain and its impact on your quality of life. Become informed and learn all you can about your health problem, your pain, pain management options, and the types of healthcare providers who specialize in pain. Visit your local library, search the Internet, and talk to people you know who are living with pain. Reference libraries will often do Internet searches for you.
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If you are not satisfied with your pain care, don’t give up. Be direct; ask your healthcare provider if he or she is comfortable helping you manage your pain, and working as a partner in developing a pain management plan. If the answer is “no”, ask for a referral to a pain specialist, or find another healthcare provider. When you find someone willing to treat your pain, make sure to follow their advice on exercise, diet and soothing activities. Take your medication as directed and give it time to work. Be persistent and don’t give up hope. You can have power over your pain.”
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You can have power over your pain. What a great message, and one that CureTogether wholeheartedly supports. People coming together, learning from each other, contributing to research, feeling better, helping to find cures. For everyone out there in pain today, we are thinking of you.

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