Find your people

Look Beyond Face Value: Moebius Syndrome Awareness DayLongtime readers will recognize this story, but I’m posting it again here–and on Medium–to honor Moebius Syndrome Awareness Day:

When Burt Minow was born in 1922, his disability — partial hearing loss and complete facial paralysis—was immediately apparent. His mouth was frozen in a sort of frown, and he could not suck on a nipple to get milk. Doctors advised his parents to put him in an institution and forget about him.

But, as his niece Nell Minow tells it, “My grandmother had an indomitable spirit.” His parents took him home, found a way to feed him, and raised him alongside his younger siblings. When it was time for Burt to go to school, his mother forced the school system to take him, confident that he could handle the work despite his limitations. He succeeded, eventually graduated from college, and enjoyed a long career in the family laundry and cleaning business. Nell recalls that her Uncle Burt “was dearly loved by all of us for his witty poems and loyalty to underdogs of all kinds, especially the Chicago Cubs.”

Unfortunately, few people outside his family attempted to communicate with Burt. He couldn’t move his lips when he spoke, so talking with him was like talking with a ventriloquist. And it was difficult to get used to looking at someone whose facial expression never changed.

Because Burt’s condition was so rare, it was not until many years later that he even had a name for it: Moebius Syndrome. It is a neurological condition affecting the sixth and seventh cranial nerves, which control someone’s ability to smile, blink, suck, and move one’s eyes side to side. For some people, it affects the form of their hands and feet, requiring surgery or other interventions.

When Nell began using the internet in the mid-1980s, she realized that if her uncle went online, he could finally have relationships that were not limited by his disabilities. She set him up with an account, and he began communicating with people who shared his affection for the soap opera Days of Our Lives. 

On the screen, represented only by text, Burt’s wit could shine.

A few years later, as the web developed, Nell tested new search engines by typing in arcane terms just to see what came up. The web was already growing exponentially, and she never knew what she might find next.

One day Nell got a hit on a search for “Moebius Syndrome.” A family with a young daughter with Moebius had created a web page and located about 500 people around the world with the same diagnosis.

When Nell emailed them about her uncle Burt, they immediately wrote back, asking his age. At the time, the medical literature was quite limited and had no record of anyone with Moebius living past their thirties. For all they knew, that would be the extent of their daughter’s life. So when Nell wrote back that Burt was in his seventies, the family rejoiced and started spreading the word.

That day, 500 families heard, for the first time, that their loved ones could have a normal life span. And Burt Minow heard, for the first time, that there were other people like him.

Three generations of hands

Hands across time, by Bill Gracey on Flickr

As Nell says, “For the last year of his life, he was the elder statesman of a very small but very excited community and it would not have been possible without the web.”

I retold that story at a conference hosted by the Moebius Syndrome Foundation in front of an audience filled with people who, if they had been born 100 years ago, might have faced either the loss of their child or life in an institution. There were so many bright eyes, so many people of indomitable spirit gazing back at me, I had to look down at my notes to regain my composure.

That conference is a chance for people living with Moebius, and their families, to learn from and support each other. New parents meet in one room to share tips about how to feed a baby who can’t suck (one trick is to make the hole in the nipple of a bottle or sippie cup a bit bigger). Parents of older children learn how to help a child with dexterity issues figure out how to write (stick a pen through a tennis ball, which they can grip more easily). And everyone crowds into the lectures on nerve regeneration, neuromuscular retraining, respiratory care, and orthodontia.

The only way they learn about these innovations and this research is by connecting with other people who have Moebius. And the only way they’ve been able to do that is by coming to these events or by connecting online.

That’s the possible future for all of us: to learn from our peers, whether we are dealing with a rare or a common condition.

Studies show that our emotional and physical health improves when we are given the chance to communicate with others who share the same conditions or life challenges. And, after 15 years of research, I have found that the internet’s most important contribution to health is not access to information, but access to each other.

At no other time in history have we been able to communicate across the world, in an instant, with anyone and everyone who has knowledge and experience to share. Never has it been so easy to collaborate, to compare notes, and to solve problems together. But because this connection is not a drug or therapy with a marketing campaign, only a small group of people are reaping the benefits: getting diagnosed more quickly, identifying better treatments, preventing complications, or simply finding the spiritual strength to keep going on with life.

The next time you Google a symptom or diagnosis, think of Burt Minow. Think about what it would be like to connect with a community of people who are taking the same medication or considering the same treatment. Those are your people. Find them. I think you’ll benefit and they will, too. We all have something to learn. We all have something to teach.

Today is Moebius Syndrome Awareness Day, honoring Paul Julius Moebius, the doctor who first diagnosed the condition in 1888. (Note that it’s really tough to say “Moebius” when you can’t move your lips. Try it.)

9 thoughts on “Find your people

  1. Duly tweeted.

    Perhaps ironic: I searched Twitter for “moebius” and found that nobody who’s tweeting about International Moebius Syndrom Day is using the #MoebiusSyndrome hashtag, which of course is a great way to find each other (even across social media platforms). Here’s its page on Symplur’s Healthcare Hashtags project.

    • Twitter is not “where it’s at” for the Moebius community, in my observation and experience attending two of their conferences. There are Moebius folks on Twitter, of course, such as Kathleen Bogart, a researcher I’ve written about before, and Natalie Abbott, who will be an e-patient scholar at Stanford Medicine X in September! She’s @_Nataliea.

      • Funny, here I am assuming that everything resembling a movement is on Twitter. Oops!

        More importantly – although I read your very first post about Moebius, I’m only now seeing the full story above. Among the many other things to say about it, this screams out: what patient communities talk is focused on what patients need and it doesn’t replace the scientific literature, it supplements it.

        Both of these point to the true north spoken by the IOM in 2012 – that medicine needs to be “anchored on patient needs and perspectives.” What a gift it is for them to be able to connect. Thanks for this.

        • It was actually fascinating managing Twitter accounts during this year’s awareness day – businesses, other non-profits and medical professionals tended to share/post more on Twitter, whereas members of the Moebius syndrome community were using Instagram and Facebook to share. I’m not really sure what to make of that (if anything!) but that’s what I observed.

          • Thanks, Natalie!

            For an awareness campaign, particularly one that has visuals, FB and Instagram are the savvier move. Fish where the fish are and use good bait 🙂

            Evidence: Social Media Site Usage 2014 – Pew Research Center

  2. Thanks for this post Susannah.
    Kate is our Burt. A rare disease. The only child in Canada alive with it (diagnosed) and one of 20 known cases world-wide.

    We have developed an online community of moms and dads with medically complex and fragile children. Some with a diagnosis and some who are still working to find out what type of condition their children have. Nonetheless, we are bonded and we support one another and though our kids are different – they also have a ‘community’ through us.

    Someday I hope Kate is the ‘elder stateswoman’ for SIFD.
    She is already blazing a trail as the first person in the world to be diagnosed with this disease. It was literally discovered because of Kate.
    She has already helped many others who have been on the same diagnostic and medical odyssey, but helping their children be diagnosed. She is informing doctors about what treatments may and may not work and how best to keep children with SIFD medically stable.

    I take a lot of faith in the power of Facebook, blogs, Twitter, CaringBridge and the like to connect us faster and better. To support where no supports really exist.


    • Thank you, Julie, and I share your hope that Kate is the elder stateswoman of SIFD some day!

      And I love this line: “To support where no supports really exist.” That, to me, is the power of online tools to connect us, when we could not be connected before.

  3. Realized I hadn’t commented on here although I’ve tweeted about it! It’s one of the most consistent pieces of advice I give newly diagnosed families and was in my recent “Letter to the Before Me” post. It also reminded me of a recent blog post I did about my annual weekend with my peeps, my Hunter Syndrome moms, that I bet would resonate with you given this post. That trip every year is planned to a T and relished in our hearts throughout the year. Thought you might like the meme too –

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