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:
.

• 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

.
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.

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.
.

“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.”
.

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.

I’m only one person. How can I possibly impact disease research just by checking off what symptoms I have and what treatments I’ve tried?

If you are thinking this, you’re not alone. The idea of finding cures for human diseases seems like such an enormous challenge that one individual person can feel insignificant. People are donating their spare computer cycles to Stanford’s Folding@home research project, walking for cures, and raising awareness on their blogs. But there must be more to do, some way to get research going faster.

At CureTogether, we believe the secrets to understanding and ultimately curing diseases are locked away inside the bodies of each person who has a condition. By asking patients about their experiences, we can put together a large collection of data and look for patterns. This data is called phenotypic data, or health data, and is complementary to the genotypic or genetic data that is starting to be available as well.

A diagram put together by Nature Reviews (Genetics) summarizes the areas of disease research below:
.

The relevant part to look at is the green box in the bottom left corner labeled “Association Studies”. This is where CureTogether comes in, and where each individual can help. Association studies basically look for associations, or connections, between different factors. Genome-wide association (GWA) studies have made some impressive discoveries by looking at genome sequences to statistically link genes to different diseases, including Type 2 Diabetes, Parkinson’s, and Crohn’s Disease. The same thing can be done with enough health data.

So far members can report symptoms, treatments, and possible causes of their conditions at CureTogether. In the coming months we will be adding health tracking to let members chart their progress and contribute their information anonymously to the aggregate pool of research data. With enough individuals coming together in this way, we can do association studies on a number of conditions and make valuable discoveries on the road to finding cures. You can make a difference!

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:
.

“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.”
.

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.

A new trend is emerging. People are measuring things about themselves, storing them online, generating graphs and looking for patterns in their own data. Some people track their baby’s sleep patterns, others track their driving habits, or even their sex life. Monica Hesse reported on this trend in the Washington Post recently.

It’s a phenomenon WIRED editors Kevin Kelly and Gary Wolf call The Quantified Self. They have a regular Meetup group in the San Francisco Bay Area to discuss these ideas and talk about topics like: Personal Genome Sequencing, Lifelogging, Self Experimentation, and Medical Self-Diagnostics.

This is exciting for us at CureTogether because we’re developing our health tracking component based on excellent feedback from our members on what kinds of things they want to track related to their condition. It will be completely anonymous (unless you choose to share your data with your doctor or family/friends). If you have suggestions for what you’d like to track for your condition, please leave a comment below, or write to us.

Wishing everyone a healthy day.

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.

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:

-

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.

We’ve been thinking a lot at CureTogether about open source health research and how it can work. Our thoughts have coalesced into a plan, which I’ve written up here and summarized below. It was also listed as a featured article here and included on the Lifeboat Foundation blog.

We’d love to hear your ideas in the comments section. How do you see this working?

–

Summary of the Open Source Health Research Plan

Open source has emerged as a powerful set of principles for solving complex problems
in fields as diverse as education and physical security. With roughly 60 million
Americans suffering from a chronic health condition, traditional research progressing
slowly, and personalized medicine on the horizon, the time is right to apply open source
to health research. Advances in technology enabling cheap, massive data collection
combined with the emerging phenomena of self quantification and crowdsourcing make
this plan feasible today. We can all work together to cure disease, and hereʼs how.
.

The Elements of Open Source

The State of Health Research

The Open Source Health Research Plan

• Step 1: Define the “source”
• Step 2: Apply the elements
• Step 3: Develop a platform
• Step 4: Build community
• Step 5: Make discoveries

.
The Challenges

• Intellectual Property
• Privacy and Security
• Accuracy
• Awareness
• Institutional Resistance

.
About the Author
Acknowledgements
References
.

You can read the whole report here. Please join the discussion and leave your comments below.

Our own amazing Faren Inglett shares why CureTogether was started, talks about the larger purpose of what we’re doing to help people who are suffering, and explains how you can help and how you can benefit. (Thanks, Faren!)

Do you want to see more videos about the conditions we’re studying? Please let us know by posting a comment.

In support of CureTogether members and visitors from 40 countries who have come to our website, many of whom have invisible chronic illnesses, we recognize Invisible Chronic Illness Awareness Week this week.

According to Improving Chronic  Illness Care, a national project of the Robert Wood Johnson Foundation, nearly half of all Americans, or 133 million people, live with a chronic  condition.*

Globally, while infectious diseases, lack of nutrition, and other traditional killers are claiming fewer lives in developing countries, deaths attributable to chronic diseases are rising.**

The first step is bringing awareness to these invisible chronic illnesses - then we can move on to working together to help eradicate them. If you or someone you know has an invisible illness, make time this week to do something special, and take a minute to spread the word.

*MacColl Institute for Healthcare Innovation. Improving Chronic Illness Care Project.

** Population Reference Bureau. The Growing Global Chronic Disease Epidemic.