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Winner of Amgen Patients | Choices | Empowerment Competition Emerging Star of HealthCare Engagement Award
Mayo Clinic Award - LeftA winner of the Mayo Clinic iSpot Competition for Ideas that will Transform HealthcareMayo Clinic Award - R

Crowdsourced Patient Experience

September 15th, 2010 Alexandra Carmichael Posted in Patient Stories, Presentations No Comments »

This is for you.

As part of our entry for the Ashoka Changemakers’/Amgen Foundation Patients| Choices| Empowerment competition, we put together this video with stories from some of our members.

It’s to thank you and show you how people are being helped and how we’re moving forward. I hope you enjoy it! Please also feel free to enter a comment at the Ashoka site to show your support for CureTogether winning the competition. Thanks!!

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Have You Built Your Health Decision Tree?

March 3rd, 2010 Alexandra Carmichael Posted in Events, Patient Stories 2 Comments »

The first step in building your decision tree.

I’m going to my first book launch party tomorrow. I’m a bit nervous.

It’s for Thomas Goetz’s book The Decision Tree, which was just released. His book and blog carry great insight into the future of health – personalization, quantification, and smarter choices. He even created a nifty app on Wired’s website where you can build your own decision tree.

Why am I nervous? Well, the book includes my own personal decision tree (see below), based on my 10-year battle with chronic pain. So now everyone who reads it will know my story. Which is scary but also fantastic, because I think hearing people’s stories is such an important part of healing ourselves that is often missing in traditional doctor-patient healthcare.

Kudos to Thomas for putting personal, informed, patient choice at the forefront of health. I’m glad he wrote the book, and I encourage you to read it!

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Bipolar and OCD Run Together

December 14th, 2009 Alexandra Carmichael Posted in Patient Stories, Research Findings No Comments »

bipolar

A playful placement of pills. (Credit: me and the sysop)               .

“I’m using this with my cognitive therapist and it’s… amazing.”

I got this email from Christopher, a CureTogether member with Bipolar Disorder:

“I have never found a more useful “biofeedback” tool.  It has helped me enormously in understanding my Bipolar I condition… You’ve seriously changed my life.

Words like Christopher’s inspire us to keep doing the work we’re doing, and putting out discoveries like today’s. So here goes.

We found a strong association between Bipolar Disorder and Obsessive-Compulsive Disorder (OCD), which independent studies published in established journals also confirm. In graphical form:
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bipolarocd.

People at CureTogether who report Bipolar Disorder are five times more likely to report Obsessive-Compulsive Disorder than members with no Bipolar Disorder. This comes from a study of 464 people sharing data online for the past year.

For details on this finding and how it matches up with other studies, read on… Read the rest of this entry »

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I, Medicine: Predictive Biometrics and Health Optimization

December 6th, 2009 Alexandra Carmichael Posted in Health Tracking, Patient Stories 4 Comments »

bardThis is a guest post from Bard C., a CureTogether member from Australia and self-tracker who has made some interesting discoveries about his own health. Thanks Bard for sharing your thoughts, perspective, and a link to your own self-tracking system!

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The most important online applications to be developed since the birth of the Internet are less than a decade away, yet they remain largely off the radar of investors and web-developers. These applications are optimizers for the most important thing we have – our health.

Here’s why… Read the rest of this entry »

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Wayne Cho: Depression/Anxiety Hero

June 17th, 2009 Alexandra Carmichael Posted in Condition Awareness, Events, Patient Stories No Comments »

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.

inthewater

Here’s what he wrote to his Facebook followers after the successful completion of his run last week: Read the rest of this entry »

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The Personal Side of Tracking

February 22nd, 2009 Alexandra Carmichael Posted in Health Tracking, Patient Stories No Comments »

Here’s a quick slideshow I put together about what I learned over 5 months of tracking my health, from August 08 to January 09.

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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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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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