Friends, I have yet another so-extraordinary-it’s-ordinary story of peer-to-peer health care to share.
Andrew Wilkinson wrote on Twitter:
A few months ago, as a last ditch effort, I posted on Twitter about the horrible acid reflux which I’d been suffering from for almost 10 years. I had tried just about everything. Proton pump inhibitors, dietary changes, supplements, throat exercises, acupuncture—you name it.
I was getting to the point where I was looking into highly invasive surgeries like Nissen Fundiplication (a surgery where they wrap your stomach around your esophagus to keep acid from coming through), but figured hey, what was the harm in asking Twitter…
A few minutes later, I got a one line DM from @jordanmoore: “Can you burp?” I have never been able to burp, but never thought much of it. Maybe 1-2 times per year, I’ll let out a random burp while laughing really hard. Even as a baby, my parents said I never burped…
Instead, after almost every meal, I’d start to feel a pressure in my upper stomach and throat after eating. Except instead of letting out a burp, to relieve it, the pressure built and built. Then, usually, I’d start getting acid reflux…
@JordanMoore’s brother had the same affliction, and turned me onto a Reddit community called NoBurp (http://reddit.com/r/NoBurp) It turned out there was hundreds of us all over the world, and one of the top symptoms was chronic acid reflux that didn’t respond to treatment…
Even crazier, a doctor in Chicago had recently published a study, validating this as a legitimate condition and showing that Botox injections in the throat resolve the issue for 80% of patients. He dubbed it Retrograde Cricopharyngeus Dysfunction.
So, in a few weeks, I’m off to Chicago to get some throat injections and hopefully solve my reflux for once and for all. Here’s a funny little documentary that a fellow NoBurp sufferer just made, showing his successful treatment:
Some people cry at videos of dogs reunited with their owners or children hearing their mother’s voice for the first time. I’m embarrassed to admit that I just shed a tear watching a guy learn how to burp…
Thank you, @JordanMoore! The Power of Twitter!
What a story! And yes, three cheers for the internet’s ability to connect people not only to information, but also to each other. Or, as one person replied: “Having 50K followers is the best kind of health insurance.”
Let’s break it down:
- A man has mysterious symptoms that at first seem more annoying than debilitating. He goes about his life, including being an early Twitter user (he joined in 2006, the platform’s first year).
- The symptoms get worse and he seeks medical help. Ten years pass without much improvement despite increasingly serious interventions. He continues to contribute to a growing online community that has little or nothing to do with health or health care.
- Just before he undergoes expensive, invasive surgery, he posts a description of his problem to Twitter. Within minutes, a follower messages with a question that no clinician has asked. The answer turns out to be the key to an underground community of fellow sufferers and possibly a lower-cost, less-invasive alternative to surgery.
If peer-to-peer health care was bottled, stores would not be able to keep it on their shelves. Fully 9 in 10 teens and young adults who have tried it say it was helpful.
Other examples of peer connection are abundant, once you start looking: A woman posts a picture on Instagram that prompts someone to ask a doctor a new question – and it turns out to be the key to a diagnosis. Someone else shoots a quick video of how to use a baker’s spatula to safely turn her incapacitated father in bed so the sheets can be changed – and shares it with her sisters so they can save their back muscles. Someone hears about a drug interaction and shares the news with his online community – alerting a patient in need of that just-in-time advice.
How might we help more people:
- Understand the power of cultivating communities, before they need them?
- Learn from peers about how to spot and describe relevant symptoms?
- Be open to the possibility of help from unexpected sources — and to the possibility of helping others?
I’d welcome your ideas, suggestions, and stories in the comments below.
Illustrations by Reframe Health (excerpts from the Peer Health Advice video we produced together.) Special thanks to Lisa Bari for the tip about Andrew Wilkinson’s tweet thread.
Just amazing. I wouldn’t say “so extraordinary it’s ordinary,” because this one goes WAY beyond the usual. (Who ever heard of this condition???)
But I’ll disagree with this: “If peer-to-peer health care was bottled, stores would not be able to keep it on their shelves.” If it was bottled and promoted” it might fly off the shelves … but then we have professionals who still warn against it. So I’m grateful to you for the promotion part, which in turn becomes a great addition to our responses to “Stay off the internet.”
Thanks, Dave!
You are right — we need to see peer health advice promoted and supported before we will see it go mainstream.
As for extraordinary, nothing has yet exceeded Brett Alder’s allergy story.
Susannah, I was reminded of this recent Freakonomics episode (http://freakonomics.com/podcast/home-innovation/) about home-based innovation and Dana Lewis and the Open Source Artificial Pancreas movement. I love the point she makes about why they decided against commercialization–because they were trying to fill the gaps and help people with diabetes. So inspiring what can happen when people connect their experiences and ideas online.
Yes! Dana and her OpenAPS compatriots are wonderful examples of peer connection. Thanks so much for sharing that episode, which I haven’t listened to, but will. So much good comes from people sharing what they know, without an eye toward making a profit or even getting credit. My last question in the post hints at that idea: We not only stand to benefit from peer advice we receive but also from the good feelings that come when we, in turn, help others.
Man i too had the same kinda scenario as experienced by Andrew Wilkinson
Years ago at the age of 15 I had indigestion early in the morning and I vomited heavily around 12 pm
After that day onwards I had sensation of something stuck in my throat/lump in throat feeling, inability to burp properly/difficulty in belching,bloaty feeling, flatulence, improper bowel clearance,pain in lower throat,acid reflux etc
Suddenly after a few weeks I felt a sharp pain in my lower throat
My mum thought it was some heart related issue we went to a cardiologist and I got a sonography & 2d echo done
Everything was clear nothing was wrong
Dr said so
Went back
But the above mentioned symptoms still persisted
After a year or so around the age of 17 we went to physician to identify the cause of my pain & suffering
The dr said I have Gerd + ibs(the ibs was caused due to gerd) he said it should resolve within few months and gave medications
Although that didn’t seem to work
Again after a year I was 18 we went to a GI dr to discuss my gerd problem he said to go for a barium swallow xray test
And that also without a doubt was normal
After a year I’m 19 now
I’m unable to hve a good night’s sleep my quality of life has been highly affected
He later refered me to a gerd specialist who therefore performed an upper endoscopy + h pylori test to find out if I have gerd or so
And later again the same all my reports were normal once again and I don’t have GERD
But still my symptoms were persistent
I was given a whole lot of PPIs and antacids till now which only relieved my symptoms but didn’t fix it
I modified my lifestyle and diet to a whole new level
Still no results of improvement
It’s been almost 4 1/2 yrs since I’m suffering
But finally now after tons and tons of self research I found out some called as R-CPD which kinda mimics the symptoms of GERD
But one more thing I would like to mention here is that I’ve always have had hyperacidity bcoz of my genetics since my father and his father (my grandfather) and uncles have a history of hyperacidity was creating the reflux problem that combined with the inability to burp (I.e. R-CPD) created a whole lot of different problems
So yeah basically I have hyperacidity+R-CPD
Btw I was an athletic boy
Asaad,
Thank you so much for sharing your story — amazing! I hope this post continues to be a beacon for other people with the same symptoms and worries so that they know they are not alone. There are other people who are dealing with these issues and who have found ways to solve them.
Best wishes on your journey toward good health.
Wow: I never heard of such a thing! Not surprising since it was only identified in 2019. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6572913/
This 2 minute video seems to explain it clearly. Have you had botox for it?? https://www.youtube.com/watch?v=R3YTHHdskMM
For future visitors, there seems to be lots of discussion about r-cpd on Reddit. https://www.reddit.com/r/noburp/search/?q=r-cpd&restrict_sr=1 As always, browse carefully and think through what you find.
My R-CPD was misdiagnosed for many years as GERD! Finally when a burp would come it was not a burp, but a explosion! Eventually it is followed by a bad case of *Dyspnea, inability to breath & fully yawn, inability to draw up phlegm, etc *Oxygen level(oxi-meter) stays high due to forced take in breathing/ air that get’s trapped, backs up swelling the abdominal till it finally comes out as a fart! THIS CAN TAKE HOURS! Over the years I’ve fractured, broken bones, etc, but nothing is as painful as this!
Tim, thank you for sharing your story! I’m so glad that you found this post and are hopefully getting good care now.
I have r-cpd, diagnosed by an ENT surgeon after 2 years of pain so horrific I didn’t want to live anymore. He put a camera down my throat & explained my oesophogus is so stretched out due to excessive gas with nowhere to go, that I no longer have any ‘peristalsis’ / natural waves which help food go down the oesophogus. In a separate manometery test (tube down my throat into my stomach for 24 hours), they reported a 90% peristalsis failure and constant air travelling up to my throat and not going any higher….ie I CANNOT BURP. The Upper eosophogeal sphincter was proven to be too tight, but despite this report, I was still told that this is not the cause of any of my chest pain. I told Drs and Gastroentolorogists about my inability to burp numerous times but nobody listened as they said it wouldn’t cause pain or problems…despite so many clues! Drs need to listen to patients and open their minds, R-CPD is debilitating & I’ve met many new friends with the condition who also were driven to despair for years and years of being ignored and not taken seriously. I hope that we can continue to spread the word as more of us are getting botox and the R-CPD community is growing online 🙂 p.s…Thanks to botox, I am now burping and I hope this will eventually reduce my pain and the damage isn’t permanent.
“Drs need to listen to patients and open their minds” <-- yes! Thanks so much for sharing your experience. My hope is to be a beacon on the horizon for people who search for symptoms and can stumble into a peer community to get the advice & insights they need.
Rebecca, I’m just horrified by your story.
There’s a point medical science really truly needs to add to its rigorous training of students: Truth is important, but not all truth has been discovered yet!