When I was writing the Pew Research report, “Peer-to-peer Healthcare,” I switched back and forth between numbers and stories, national survey data and notes from my fieldwork among people living with rare conditions. I learned to scan my spreadsheet of rare-disease respondents for women’s names since they seemed to stop at nothing to protect their children – or maybe they just told the best stories.
When I read “The Boy With a Thorn in His Joints,” by Susannah Meadows on Sunday evening, I was transported back to the maze of rare disease, where a chance conversation can connect you with the right clinician, the right treatment, or even just the comfort of not being alone. Meadows writes about the shock of her young son’s arthritis.diagnosis and then, later, the shock of recognition when she talks with someone whose child has the same condition.
In some ways I’m glad I read the article late, since the 665 comments (!!) had already been curated. Here’s the top comment among readers, with 548 upvotes:
I think this is a rare example of an even-handed article on alternative medicine. I appreciate your effort to make it so without denigrating medical science or proselytizing. At the same time you present a compelling story of how an open mind and a conscientious parent can tackle medical complexity.
If you don’t mind my saying, you’re a good mother, and I’m happy for you and your son.
I like to think it’s that last line that drove people to click the thumbs-up. We all hope to earn that “good mother” badge (or the equivalent). We believe that if we keep our ears and eyes open, we’ll spot the clue or get that N=1 experiment right, and save our kid. Susannah Meadows did it, maybe we can, too.
Between reading the article and writing this post, I attended the funeral of a dear friend’s mother. Mim Helfrich had 7 children of her own and mothered many, many more. Quite a few people gathering at the church yesterday considered themselves the “eighth Helfrich” and I was struck again by how one woman can make such a difference in the world.
As we discuss the “new era of patient engagement,” let’s remember the powerful force of love — and moms. Let’s remember peer-to-peer healthcare and keep watch for where we are along the scale of crazy, crazy, crazy, obvious:
Patients and caregivers know things — about themselves, about each other, about treatments — and they want to share what they know to help other people. Technology helps to surface and organize that knowledge to make it useful for as many people as possible.
– Peer-to-peer Healthcare: Crazy. Crazy. Crazy. Obvious.
Image by Véronique Debord-Lazaro on Flickr.
Wow. That’s an epic piece in the Times. I wonder, in my ignorance, if that condition is in any way related to Kelly Young’s at RAWarrior.
In your boldface block at the end what caught my eye was “and organize it.” That’s a big question mark to me. At least it can be indexed, but I don’t think we’re organized yet, huh?
Sorry to hear about your friend’s loss…
Yes, I looked on Sunday night for a discussion of the article (searching the #rheum tag on Twitter and spot-checking the feeds for @RAWarrior, @HurtBlogger, @RonanTKavanagh but didn’t see anything).
“And organize it” is indeed the new frontier. Some people and condition groups are ahead of others — it’s a significant divide. What, besides socio-economic status, makes the difference? That’s the pattern I’m looking for.
And thanks for the condolences on behalf of my friend.
I have to add a link to this amazing tribute by Claire McCarthy, MD, to her dad:
How vomit helped me through my father’s birthday
To close the loop: Dads can be just as key as moms in life and the pursuit of health.
I suffered debilitating joint pain for 3+ years. After dozens of treatments and doctors finally found gluten to be the solution by reading accounts like this!
Sorry to hear about Mrs H.
Amy
Thanks, Amy! Yes, it was a sad day, but a celebration of Mim, too, and a commitment by all of us to try to love our kids’ friends as she loved us.
As for your own experience with gluten — I’m reminded of a quote (and maybe someone who reads this can remember who said it): a doctor opened his refrigerator door and said, “This is my medicine cabinet.”
I feel compelled to include links to two stories related to the Times piece:
Paul Raeburn’s Tracker blog at MIT:
http://ksj.mit.edu/tracker/2013/02/ny-times-magazine-boy-thorn-his-joints
Michelle Francl’s Slate article:
http://www.slate.com/articles/health_and_science/medical_examiner/2013/02/curing_chemophobia_don_t_buy_the_alternative_medicine_in_the_boy_with_a.html
Again, the comments are well worth your time to read (or at least scan).
I take a lot of strength from this post Susannah. Isolation, fear, doubt (in oneself as a mom and parent) all creep in when you are faced with a rare disease, medical fragility, medical uncertainty, no-diagnosis.
I love your closing – connecting these people together, helps to connect the dots there is no doubt in that, but it is still an uphill battle. Doctors (in some instances) still seemed ‘closed off’ from patient/parental participation in rare and undiagnosed disease. Fortunately in our experience, our team has been open to our feedback and suggestions about potential diagnosis, treatments etc. (but to be honest – it took some time to get there).
As a special needs/medically complex mom to a little girl whose very life is often in my hands – I have learned to not back down, to keep asking questions, to keep pushing for more and better.
Julie
As a mother fighting a battle for the recognition of an environmental pollutant that is hurting my children, I immediately felt for Susannah Meadows. I was particularly compelled when I heard that the problem she had addressed to allow her son to be healthy was intestinal permeability (leaky gut syndrome). My children are being hurt by microwave radiation. Microwave radiation also increases membrane permeability, to find out more you can read Disconnect by Devra Davis. Unfortunately, the levels of microwave radiation in the ambient environment are climbing astronomically in the last several years because pulsed modulated microwave radiation is what wireless devices use to communicate. We are seeing increases in many diseases that are linked to exposure to microwave radiation – heart palpitations, diabetes, asthma, allergies, neurological disorders, pain, inflammation … please see http://www.electricalpollution.com for more information. The Health Issues page has information and links related to the health of effects of exposure to wireless devices and the Solutions page has steps people can take to reduce their exposure.