Making Connections
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.
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November 18th, 2008 at 1:11 pm
Dear Cure-Together Person,
This is unrelated to the present post, but is the only way I have to contact you anonymously! Suggestions:
(1) Add a contact form to your contacts page so that people can contact you WITHIN the Cure Together system. If they have to send an email to one of the email addresses you list, they will have to use their own email, which will send their names, and ruin their anonymity.
(2) Allow us to delete conditions that we created as long nothing has been added to that condition by anyone. I accidentally created “Sacral” before I even know what I was doing. I had meant to type “Sacroiliitis”. So now there is this other condition stuck in your system.
(3) You might also want to have aliases for conditions, since many go my several names — Is there any way to add aliases to a condition?
(4) Please fix this page so that after making an error on this form, it does not wipe out everything one has typed oncethey go back to fix the error!
November 21st, 2008 at 4:27 pm
Dear S-I Guy,
Thank you for writing and for the excellent suggestions! We are working to address each of these issues as soon as possible. Regarding #3 specifically, conditions already have aliases, but so far we’ve been adding them manually. I really like the idea of letting members add aliases themselves!
Best,
Daniel
November 25th, 2008 at 9:47 am
The work you are doing looking at the connections between these conditions is so amazing.
It is so important to look at the big picture the way CureTogether is!
I have 11 of the conditions above. You don’t know how happy I am that someone is examining these connections!!!
Jeanne
November 27th, 2008 at 5:49 am
Thanks so much for your comment, Jeanne, and for the great work you do on your blog to spread awareness about endometriosis and many related conditions!
This has been one of the most surprising things for me to discover personally, that there are others out there with multiple conditions, and that there may be some underlying connection between conditions I hadn’t previously expected to be related.
This Thanksgiving I’m thankful for all the people out there who have come to CureTogether to add their piece of the puzzle, and I’m thinking of all the others out there who are suffering instead of celebrating today.
December 4th, 2008 at 12:54 pm
Daniel, thank you for the response. CureTogether rules!
December 13th, 2008 at 5:10 pm
Hi Alexandra,
It is a great observation about comorbid conditions. This is increasingly common as people age. Here is a slide deck from CMS showing stats on the number of different comorbid conditions from Medicare beneficiaries (http://tinyurl.com/66qg5k). 60% of Medicare beneficiaries have 2+ chronic conditions, and 15% have 5 or more chronic conditions. Overall, according to a RAND study on slide 4 of this deck (http://tinyurl.com/56jvyh), almost 50% of people with one chronic condition have multiple chronic conditions. Also of interest is that pharma companies often use different comorbitities to segment pharma markets. For example, Coreg (carvedilol), is a beta-blocker used to control high blood pressure, but GSK primarily promotes it for hypertension to patients with both diabetes and high blood pressure.
I think what you are doing is really interesting.
December 14th, 2008 at 10:16 am
Hi Chris,
Thanks for your insights! These are fascinating statistics – I’m going to check our early data to see if it matches the larger studies, and I’ll post the results. I knew pharma markets could be segmented by different symptoms, different genetic variations, etc, but I hadn’t realized that comorbidities could be helpful in that way. It does make a lot of sense.
Thanks, I think over the next few months some very interesting data will emerge. Stay tuned!