A Preview of Rare Disease Day 2014

A Preview of Rare Disease Day 2014

My dog’s getting into the spirit of the day! Actually, he just really likes to hold things so I capitalized on that in this instance. Tomorrow I’m going to Sacramento, CA with many other rare disease advocates from across the state, along with the National Organization for Rare Disorders and the Global Genes Project. We’re not going on Friday the 28th (which is Rare Disease Day) because the legislature is not in session then… so we’re being prompt! I’m really excited to see what we can do collaboratively to advocate the cause of rare disease funding, care and research.

Canine Miscellany


A few rather un-related dog things of interest: ThreadStart, an apparel crowdfunding site, has paired with Canine Companions for Independence and produced this wonderful design. I love it, especially since I do think these dogs (and all service dogs) are indeed heros in their own right. What they do is so diverse, depending on the needs of their partners, but their loyalty and joy are truly heroic. I picked up a shirt, because a. you can’t have too many dog t-shirts, apparently and b. I love the design so much! I will wear it proudly.

And in other news:


If you’ve been watching the Olympics on NBC, you have probably seen the promos for a new television show called “Growing Up Fisher” – featuring a father who is blind and has a (really cute) guide dog. I myself am particularly fond of the one where it cuts to the dog acting as an ice hockey goalie.

I probably don’t have to tell you how abysmal the overall depiction of characters with disabilities is on television. It’s just… bad. I have measured hopes for this one, from the previews it looks really, really funny. I hope it lives up to its potential for a comedic take on life with a disability.

And I hope the dog gets lots of screen time!

Disabilities (are sort of) in Fashion

Jillian Mercado and the new Diesel campaign Jillian Mercado, 26, a New York fashion expert who has muscular dystrophy, is one of the new faces of Diesel. (Diesel )

Disabilities (are sort of) in Fashion

“Model in wheelchair stars in groundbreaking new Diesel ads” (LA Times)

This popped up in my newsfeed this morning, and I thought it was worth sharing. Great for Diesel for showcasing beauty in diversity.

When I was in high school, there was a short-lived disability culture magazine called We that changed how I viewed disabilities of all kinds. I was deeply moved by Rick Guidotti’s Positive Exposure work, and ended up publishing an academic paper on his projects. There is still such a long way to go in how our culture defines what is beautiful and what is mainstream, but these small steps are indeed small steps in the right direction.


Every few months I am overcome by the enormity of chance. I know people have different views on the concept of “why” one happens to have a medical condition (or any other defining life event)… but for me to conceptualize it, it’s just chance. Genetic fluke. Environmental. All of the above. Who knows!

It was simply chance that I was born with Moebius syndrome, and it was chance that I was born where and when and to whom I was born.  For me, those chance occurrences allowed me to have access to access to amazing healthcare and educational resources, a supportive family and community, and the opportunity to be successful.  I know that was mainly just good luck and chance, and I am grateful.

But even more shocking for me, and I think for a lot of us “sheltered” people in first-world countries is that – depending on socioeconomic status and cultural norms – many children are not given that chance. Families aren’t able to pay for healthcare.  It isn’t socially-acceptable to have a child with visible disabilities.  They can’t access necessary resources.  So they abandon these children to state care or the foster system.

Really, really unfathomable. But it happens. It wasn’t that long ago when Western countries did the same (for a heartbreaking perspective, Google “state developmental centers/schools and/or eugenics”).

This post is motivated by a child I just became aware of, “David”. He lives in China and looks so much like so many other boys with Moebius syndrome I know.  He is apparently smart and able to succeed if given the chance.  But not living in the US and being in a large foster home, he does not have access to the same resources and tools that will allow him to succeed.  The chances of him being adopted in China are slim, so he is available internationally.  Taking the chance that someone a world away might see something in him.

I hope someone takes that chance.

(If you are interested in learning more about “David” or other waiting children, see http://www.madisonadoption.com)


“The Diagnosis Difference”: stories, chronic conditions & me

“The diagnosis difference cuts another way, too. This study provides evidence that many people with serious health concerns take their health decisions seriously – and are seriously social about gathering and sharing information, both online and offline … Internet users living with chronic conditions stand out from their peers in noteworthy ways: sharing questions online and reading or watching other people’s health stories online.”

– Pew Research Center, November 2013, “The Diagnosis Difference”

I came of age as the internet came of age. I can track my adolescence, and my sometimes-rocky relationship with having multiple chronic conditions, by how I accessed my rare disease community.

It started out in the mid to late ’90s… on rudimentary web forums that were impossible to navigate.  There, discussions were heated and difficult to read but sometimes productive. People were just “meeting”, for the first time, people like them.  We all learned.  We learned what indeed was socially-acceptable in these new, volatile spaces.  We learned to take some things at face value, and others to heart.  We learned what this new sense of community was about.

Then came the better forums, easier to navigate yet also more perilous.  Looking back, in my college-aged naivete, I said things I should not have.  I revealed too much.  But maybe, perhaps, it needed to be said.  People found their voices and a sort of community within these electronic spaces–a community that sometimes translates to a real physical community or friendship and sometimes, perhaps oftentimes, does not. I read more, posted less as I grew older and more wary.

We come upon our present technological state, the era of Facebook and blogs and Twitter feeds and who-knows-what-else. I admit, I eat it all up. I read voraciously, I want to be privy to others’ experiences and advice.  I post and share, too, but I have hang-ups. I, like everyone else who does or does not have chronic health conditions, am complex. I am not a sum of my genetic errors, but I am indelibly defined by them. I uncontrollably hesitate, though, when I sense that I am being viewed primarily through the lens of my conditions only.

Maybe this is why Moebius syndrome is listed as the third of the four things this blog is about.

Because it is about me. Because, while I am defined in many ways (like it or not) by my chronic conditions, it’s more complex. My story is unique, like everyone else’s. I can’t help but get hung up in the pressing question of “why?” Why will whatever I have to say matter to someone else, who isn’t me? I have definitely not done everything “right” in this whole living with a chronic condition thing (if there ever is a “right” way to live), so please don’t use me as any sort of paradigm or inspiration.

People do, though. Because that is what is available. And I can’t blame them. I get sucked in, too, to the stories websites. I read voraciously… and then am left numb. Because, really, what does one do with that voyeuristic feeling after you navigate away back onto Candy Crush or whatever your mind-numbing game of choice is.  That is my fundamental struggle in my life with chronic conditions: what do I do with this reality, with my existence in it?

Pew Research Center, November 2013, “The Diagnosis Difference”

On My Bookshelf: Jacob’s Eye Patch


Jacob’s Eye Patch
by Beth Kobliner Shaw, Jacob Shaw, Jules Feiffer (Illustrations)

Being different can be hard.

This funny, spirited story—written by bestselling author of Get a Financial Life Beth Kobliner Shaw with her son Jacob, and illustrated by award-winning picture book artist Jules Feiffer—encourages young readers to embrace the thing that makes them unique…Jacob is in a hurry—a really big hurry—to get to the store to buy a special toy. There’s only one left, and if he doesn’t get to it soon, he’ll never forgive his mom and dad for making him late. Strangers often stop Jacob’s parents on the street to ask about him. See, Jacob is unusual: He has an eye patch. Jacob knows people like to ask questions, but do they have to ask right now?

Luckily, Jacob gets to the store in time, and he meets a new friend who has something different, too. In the end, Jacob’s journey makes him more aware of other people’s feelings. Jacob’s Eye Patch is the go-to book for talking about differences that kids can enjoy and parents can turn to for guidance.

Everyone has something different! What’s your something? Share your child’s story at JacobsEyePatch.com. –Goodreads

This book was just published, and I can’t wait to read it!

My review is coming soon.

Hopefully I can add it to my list of valuable books on differences. I’ve read numerous books on all kinds of disabilities, but I don’t think I’ve ever read one on eye patches yet. As a long-time eye patch wearer, I would have been positively obsessed with such a book as a child!

I hope I like it – We’ll see!

Pre-Match Day: “Assistance dogs meet their new owners”

“Assistance Dogs Meet Their New Owners”

(Lovely, but how did they get around the information/media/social media embargo? We weren’t allowed to divulge names until at least Monday of the 2nd week, if not later! Guess NER isn’t as hardcore about it as NWR!)

Our Pre-Match was 6 months ago!

Our Pre-Match was 6 months ago!

I’ll save the long post for next week… but today marks 6 months since pre-match day! Hard to believe. I really didn’t know what direction they were going to go with me dog-wise: on Tuesday of Team Training I walked both Cassius and a sweet little black lab female named Nancy (who was placed in May as a facility dog), as well as another dog once (Fame, who actually ended up being COC’ed during/after Team Training for cataracts). I figured both Cassius and Nancy were likely contenders… but I couldn’t get over Nancy’s name. Natalie and Nancy… a recipe for confusion! And while I know you can call your dog anything, it just seemed a little rotten to change their name!) But Nancy walked a little fast and Cassius was all about the cuddling and hanging out in release, so I had a good idea and was not totally surprised.

If you had told me before Team Training started that I would end up with a big male dog I would have probably laughed. Didn’t seem very practical – I totally pictured myself with some tiny dainty little thing. And as much as I love Cassius… tiny and dainty are two things the guy will never be. But CCI tells you to abandon your preconceptions… and I believe them. Who knew the best dog for me is big (weighs more than half what I do! that used to be my barometer point for “too big!”), slobbery goofball of a lap dog?

I wish everyone involved in the Team Training this time around – from puppy raisers waiting to see if their dogs have been placed to students waiting for their assignments (I had the weirdest dreams the night before placement – including one that involved receiving two dogs!) to instructors trying to figure this all out – all the best. It’s challenging and exhausting and stressful… but so, so rewarding.

International Assistance Dog Week: There’s a dog for that!

International Assistance Dog Week: There's a dog for that!

This wins for best tag line!

Having not just one but a few different medical conditions, I kind of feel sometimes like I’m inundated with awareness weeks and months: apparently there are now two different ones for craniofacial conditions, a day for Rare Diseases in February, Moebius syndrome in January, and probably one sometime for alopecia areata – which has been in remission for so long I don’t keep up with their events!

But anyway, this week is International Assistance Dog Week. It’s great that it’s being celebrated so that all different types of dogs, handlers and teams can be recognized – from more traditional guide dogs and dogs that help people with mobility impairments to seizure and diabetes alert/response dogs, dogs for people on the autism spectrum, and therapy dogs working in a variety of settings.

There are several events and demonstrations happening, if you have any questions or are interested in how an assistance dog might work for you or your family… think about attending one of these (or commenting below, I’ll try my best to answer!)