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Aug 5, 2021 • ACHONDROPLASIA, LIMB LENGTHENING, SURGICAL

11 years since

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A post shared by Chandler Crews (@chancrews)

achondroplasia, baltimore, biomarin, limb lengthening, surgery

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achondroplasia research conference | 2021

hi, I’m chandler!

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things i like to write about

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• she’s not a regular mom, she’s a cool mom

• she’s not a regular mom, she’s a cool mom 💁🏼‍♀️ how many momma’s do you know that are like “yes baby! let’s go girl!!” when you’re like “hey, I want to break my bones” 🤪 and then she immediately starts doing all the research and things 🥰 and two weeks later on 8/5/10 becomes one of your best days together because things are getting real 🥹 and then 13 years later from that very date you’re going to have another ~ best day ~ ever 🩷 Happy Mother’s Day, momma 💐 i love youuu!! 💜

#mothersday #mom #momma #mommasgirl #momsanddaughters #achondroplasia #dwarfism #dwarfismawareness #skeletaldysplasia #limblengthening #patientadvocacy #patientadvocate #caretaker

• Long Live (Legs) (Chandler’s Version) I sai

• Long Live (Legs) (Chandler’s Version)

I said remember this moment, in the back of my mind…it was the end of a decade, but the start of an age 🥹

you could say that 10 years ago marked the beginning of my ‘Speak Now’ era as it was my third lengthening and I was 19 years old 💜

my third lengthening is the one I will always remember most. Dr. Standard once told me the same thing…it was a LONG day in OR 19(!!!) – one of the Precice Nails (internal telescoping lengthening rod) had trouble going into my femur and he was fighting with it 😅 but I also knew (pre-operatively) from that moment forward, my life would never be the same. 3’10” to 4’6” (okay, 4’5 and three-quarters) was one thing, but 4’5” to 4’11” was magical 🪄

before lengthening, I felt like I was standing on the sidelines of my own life wanting, waiting, and wishing for that moment and life. I had cynics telling me how absurd it was for me to be so ‘brutally honest’ and ‘unfiltered’ about the choice(s) I had been making about my own life and the decision to share about them. there were so many moments where it truly felt like I was fighting with dragons 🐉

despite all of that, it was the time of my life…crashing through walls (with wheelchair marks at the HP house and my own to prove it) and shining a light on the life I always longed for 🥰

Long live my long(er) legs and the magic that was made ✨

P.S. this is a PSA to let everyone know that when #SpeakNowTaylorsVersion comes out on 7/7, it will be my entire personality 🤗

@taylorswift @taylornation, this is me trying to ask for the secret song (piano) on 8/5 to be Long Live (Taylor’s Version)...which will also be exactly 13 years(!!!) TO. THE. DAY. of when I made the initial decision to undergo limb lengthening (I’d also scream, cry, and throw up if @jackantonoff was a surprise guest) 🍅

#limblengthening #achondroplasia #dwarfism #dwarfismawareness #skeletaldysplasia #precicenail #precice #nuvasive #fixator #externalfixator #taylorspatial #taylorspatialframe #orthopedicsurgery #orthopedics #patientadvocate #patientadovacte #taylorswift #taylorsversion #taylornation #swiftie #longlive #speaknow #speaknowtaylorsversion #tstheerastour #erastour

• forever on airplane mode 🤪✈️ but totall

• forever on airplane mode 🤪✈️ but totally worth it for the new stamps in my passport 📇 although my body is still recovering to its normal time zone, it does know that today is the #perfectdate because it’s #DNADay23 🧬 today marks 20 years since the completion of the #HumanGenomeProject in 2003 🧫🔬

it’s only fitting that I share about the advances in achondroplasia #genomics that I learned this past weekend 🤓

this past weekend I attended the inaugural European Achondroplasia Forum – #EAF in #Frankfurt, Germany 🇩🇪

throughout this one-and-a-half-day event, attendees listened and learned from some of the top experts and researchers who are dedicated to research and advancing care for those with #achondroplasia and other skeletal dysplasias 🩻

it was so wonderful getting to see some of my favorite fellow advocates across the world —
@aisac_odv 🇮🇹
@andoportugal 🇵🇹
@fundacionalpe 🇪🇸
Steph Birch, UK 🇬🇧
…and who share the same values and mission as the @chandlerproject 🦋

as research and science evolve to develop treatment options to alleviate and prevent potential health and life-threatening risks associated with achondroplasia, it’s so important that as advocates and patient groups, we come together and join forces to work with the researchers and physicians behind the science and engage with the community as a whole 💜

for those who didn’t attend EAF or who did, but want another opportunity to hear more about research, you can do so by attending the achondroplasia research conference [ @pharmachon ] June 16-18 in Chicago, IL (shameless plug 😜🔌) ***link in bio***

[ more posts to come soon about my experience at EAF ]

#chandventures #travel #travelgram #weekendaway #sheratonfra #achondroplasiaresearch #achondroplasiatreatment #dwarfism #dwarfismawarness #limblengthening #voxzogo #vosoritide #infigratinib #transconcnp #sar442501 #tyra300

• starts watching @daisyjonesandthesix and immed

• starts watching @daisyjonesandthesix and immediately enters a new hair-a ✨ #obsessed

👩🏻‍🦰: @rachelweaver_styles / @fifthandmanellc

#rachelweaverdoeshair #baltimorehairstylist #kevinmurphy #baltimore #canton #sola #daisyjonesandthesix #auburn #auburnhair #newera #newhair #beforeandafter

• momma raised us to love animals, always be min

• momma raised us to love animals, always be mindful of your surroundings…without giving the obvious side-eye + rbf (still working on that one), and to never lose your shoes 💕

there are so many wonderful and empowering women in my life, but at the end of the day, it’s my momma and my sister (WHOSE DESIGN WORK WAS IN THE RECENT POPULAR @HULU @FXNETWORKS SERIES #FLEISHMANISINTROUBLE) who have shaped me into the woman I am today 💕

#InternationalWomensDay #IWD #IWD23 #IWD2023 #momanddaughters #mothersanddaughters

• shimmering beautiful and absolutely OBSESSED,

• shimmering beautiful and absolutely OBSESSED, @eclecticgeminijewels 🪩 the front facing camera does not show these beauties off the way they deserve and of course they needed to be shown off in their natural light ✨ (did I already mention that I’m obsessed? because I am) 🤍

#eclecticgeminijewels #allthatglitters #groovydisco #mirrorball #shopsmall

• when I first heard this, I knew right away I h

• when I first heard this, I knew right away I had to use the audio because obviously 😅 I always say, “limb lengthening…it’s a thing” 💁🏼‍♀️

and no, I’m not lengthening again – 4’11” is a good height 🥰

[audio belongs to @cbstv @colbertlateshow]

#achondroplasia #dwarfism #dwarfismawareness #skeletaldysplasia #limblengthening #limblengtheningsurgery #orthopedics #patientadvocacy #patientadvocate #paulrudd #marvel #marvelcomics #marveluniverse #marvelstudios #antman #antmanandthewasp #antmanandthewaspquantumania

• what's a girl gonna do? a diamond's gotta shin

• what's a girl gonna do? a diamond's gotta shine ✨ turning 29 is reminding yourself that while you still may be living through the bridge of "you're on your own, kid" ...you've got diamonds in your eyes, polish up real nice, and can still make the whole place shimmer 🤗 #bejeweled

• it's me, hi, I'm the problem it's me …and ha

• it's me, hi, I'm the problem it's me …and have been ever since 1993 ✨ #tbt

[ actually the real problem is the #FGFR3 mutation but that’s for another post ] #throwbackthursday #achondroplasia #dwarfism #skeletaldysplasia #november #birthdaymonth #birthdayweek #scorpioseason #antihero #CHANtiHero /// obnoxiously tagging Taylor and Jack for obvious reasons

• saving daylight may have come to an end, but s

• saving daylight may have come to an end, but saving limbs never will 🤗 through rain AND shine, every day is a great day to #makeadifference for the kids 💚 especially if it involves 10k steps before noon and seeing the prairie dogs & otters at the @marylandzoo 🦦

#RFOK22 #lifebridgehealth #pediatrics #orthopedics #savealimb #baltimore #marylandzoo #allforanimals #achondroplasia #dwarfism #dwarfismawareness #skeletaldysplasia #limblengthening #standardized #iSTANDcorrected #patientadvocate #patientadvocacy

• it’s wear @greenday…I mean, it’s “wear

• it’s wear @greenday…I mean, it’s “wear green day“ 💚 today is #dwarfismawareness day and you’re supposed to wear green for awareness. if you’ve been following me for awhile, I think it’s safe to say you’re aware 🤗 (also, I hardly own anything green – I literally have more Green Day branded articles of clothing than actual green articles)

I share so much about my diagnosis on other days of the year that I’m sure most of you would be like, “I knew that already” (even I get annoyed with myself) and, it’s important for me to NOT always be constantly posting about #achondroplasia because it’s not the only thing there is about me and it’s not what I want to be known for (for some reason that’s so cringe to say lol) but living with and dealing with achondroplasia is just that – every day is a day of living and learning with how to deal (jUsT LiKe EvErYoNe eLsE iN tHe wOrLd…just differently 🥴

while living, learning, & dealing with #dwarfism – I’m also taking an excessive amount of pictures of beau, listening to Green Day when I’m not listening to @taylorswift + vice versa, in pure barre or core power, watching Y2K sitcoms or crime dramas, probably exceeding the FDAs recommended consumption of @dietcoke and texting my parents “what’s…?” or “how do I…?” 😜

of course there’s more to me than just those things, but my advice (especially to those of you who may know me as the only person you know with dwarfism) is to always be cautious and aware that there’s always more to a person than their diagnosis – ask questions if you’re curious about something, but also know that not everyone wants to always talk about their diagnosis and if they say that, that’s okay! don’t take it to heart 💔

for what it’s worth, if it’s me you’re talking to, starting a conversation about Taylor Swift or Beau or recipes for chocolate chip cookies or brownies is MUCH more preferred than striking up a discussion about my diagnosis 🤎

that’s all I really have the energy for today and that’s enough 🥰 because at the end of the day, we’re all human 💕

#dwarfismawarenessday #dwarfismawarenessmonth #dam2022

• this week…no, the entire month so far has be

• this week…no, the entire month so far has been anything but delightful 🥲 however, I’m trying to remain ✨ a constant fucking delight ✨

…at least that is until tonight @ midnight sharp – then who knows what I’ll be…anti-hero?? vigilante shit??? either way, I’ve been dealing with some real shit lately (a lot of mayhem if you will) but dealing with it during a new @taylorswift era makes it easier to tolerate (at least I hope) 🖤 #TSmidnighTS

• highlight of the week ✨ if you aren’t havi

• highlight of the week ✨ if you aren’t having gelato with Marlowe, you aren’t doing it right 🍧 it was such a treat meeting this sweet girl and her dad this week 💕

#achondroplasia #achondroplasiaawareness #achondroplasiaisbeautiful #dwarfism #dwarfismawareness #dwarfismawarenessmonth #DAM2022 #skeletaldysplasia #patientadvocacy #patientadvocate

• it’s #october3rd which means, it’s #MeansG

• it’s #october3rd which means, it’s #MeansGirlsDay 💖

it’s also #dwarfismawareness month – so, with it being 10/3 and since I was originally 3’10” AND since I’m a pop culture junkie…I couldn’t miss out on this opportunity to make this post…obvi 💁🏼‍♀️

most adults with #dwarfism have an adult height of 4’10” and because there are over 300 different types of dwarfism, adult heights can vary by type, etc. at 16, I was at my adult height of 3’10” which is actually pretty small for someone (adult) with #achondroplasia (ACH) – growing up, I was always at the bottom of the ACH growth chart 📈

going through #limblengthening resulted in my adult height being 4’11” – just ONE inch more than the average adult height for someone with dwarfism. however, despite the one-inch difference, limb lengthening is still frowned upon within the community which is unfortunate 🥲

truly, “I wish I could bake a cake 🍰 filled with rainbows 🌈 and smiles ☺️ and everyone would eat 😋 and be happy 🤗” no matter the choices we make on how to live with our conditions – we all still have dwarfism, and that’s a fact 💚

#meangirls #octoberthird #DAM #DAM2022 #achondroplasiaawareness #patientadvocate #patientadvocacy #leglengthening #popculture #2000snostalgia #Y2K #y2kfashion #millennials

• dumptember 🚛 aka september photo dump 🎞️ september ’22, I’ll remember you ~

the month started by recovering (still am) from the announcement of #TS10 aka #TSmidnighTS and @taylorswift making me go bankrupt 🥲 (got that lavender vinyl as if my life depended on it 💜) and currently gatekeeping #vigilanteshit as my track, but we’ll see come 10/21 🌌

@notacorgijustachi got to experience the west coast with me as I headed to my first @globalgenes patient advocacy summit where I was nominated for the rare champion in advocacy (individual) award alongside 56 other nominees! the best part was seeing familiar faces and meeting internet friends in person 💞 FYI – “don’t befriend strangers on the internet” doesn’t apply to patient advocates 😝 I’m looking so forward to next year + other events and learning more about how to be a better advocate and organization 🦋 if you’re a patient advocate or a nonprofit, check out Global Genes if you haven’t already! 🧬

my time at #GGSummit22 was cut short due to an appointment I had. for the first time in a long time, I’m dealing with something completely unrelated to orthopedics – it actually threw me off that it wasn’t Dr. Standard walking through the door at the appointment 😅 and although I wish I could’ve stayed for the remainder of the summit, it reminded me that at the end of the day, taking care of yourself and health comes before patient advocacy 💜 and for those interested, I’m planning for a more detailed post about my overall experience at the summit – just need a min to get my ish together 🤗

finally – sweatshirts, leggings, and @ugg season is back 🍂 I got two new pairs of boots for this season that I’ll have to share because #lifeafterlengthening just hits differently in the fall and winter seasons…IYKYK 😉👢

will be sharing more all month long with it being #dwarfismawareness month, #midnightsmayhem, and so on – but for now…IT’S FINALLY FALL, Y’ALL! 🎃👻🌙☕️🤎☔️

#achondroplasia #dwarfism #skeletaldysplasia #limblengthening #patientadvocate #patientadvocacy #DAM2022 #DAM22 #travel #globalgenes #bekind #health #takecare #sweaterweather #spookyseason #feelslikeugg #uggseason #boots #taylornation #october

• spent the weekend doing end of summer cleaning

• spent the weekend doing end of summer cleaning + organizing – still have much to do, but was able to still find the time yesterday to get out with beau. while out, we ran into some pretty friends 🦋🐝🌸 (honestly, beau didn’t care at all) but it was nice to take a minute and just watch them explore and soak in the beautiful sunday summer evening while thinking about all that there is to come in september and fall in terms of adventures, health, work and so on 🧡

i’m beyond ready for august to slip away into a moment in time to start fresh in september…that was, of course, all before @taylorswift went and chaotically announced midnights 🕰

either way – no matter the chaos we live in, here’s your reminder to take time and go on a walk, blast taylor swift, and to stop and just watch the butterflies & bees care for this pretty place 🌎

#endofsummer #summerevening #summer #sunday #goldenhour #august #butterfly #butterflies #monarchbutterfly #nature #garden #flowers #baltimore #maryland #prettyplaces

• your new life is going to cost you your old on

• your new life is going to cost you your old one…all you’re going to lose is what was built for a person you no longer are 🦋

yesterday I came across this passage by @briannawiest while thinking about what I was doing 12 years ago at that moment to prepare for what was happening at this moment 12 years ago today – not even in the OR yet (and wouldn’t be for several more hours)

stumbling across the passage was one of those “wow, I really needed that” moments. I even said to myself, “damn, where was this when I needed it 12 years ago?”

at 16, I didn’t think I was getting a “new life” just new legs – but I was wrong, so wrong (it’s one of the very few instances in my life that I appreciate and admit that I was proven wrong)

now, not a day goes by where I think about what could’ve been. in my mind, knocking down the walls and demolishing the bricks of what some may feel was supposed to be my life vs the life I built on my own with the help and guidance of those who stuck through it with me and who I met on the other side — I wouldn’t change it for the world.

I knew openly sharing my experience was going to cost my comfort zone and at times my sense of direction. it’s a price I wanted to pay. I know there are people who don’t like me and at times, I can be hard to understand, but none of that matters.

what matters to me is knowing that I gained more than just height.
I gained self-awareness.
I gained a body & voice that I wanted to be seen & heard.
the ones with me today – whether there from the beginning, or later on, are the ones I know who love me and I know who understand me and see me.

I’ve dealt with a lot these past 12 years. I may have lost the life that was built for the person I was then, but I don’t miss it at all.

here’s to a dozen years of standing corrected. standing happy. standing straight. standing tall. and standing up.

truly, thank you to everyone who has stood with me through it all – you don’t always get to see what happens offline and your comments + support always mean so much - thank you 🥰

#achondroplasia #dwarfism #dwarfismawareness #skeletaldysplasia #patientadvocate #patientadvocacy #limblengthening #LEGiversary #standbyme

• in honor of national #patientadvocacyday, here

• in honor of national #patientadvocacyday, here’s a #FBF recapping my recent trip to San Francisco 🌁

last week, the @chandlerproject – along with several other patient advocacy + community organizations, met with #QEDtx to discuss current events and what the future looks like for #achondroplasia. It was a much-needed and powerful conversation on what the community as a whole wants and needs that I feel is leading us in the right direction at this time 💚

next week marks 12 years since my patient advocacy journey began and at 17 years old, there was so much I didn’t know, but I knew deep down there was a certain radiance to being young, naive, and sharing things on the internet you knew others wanted to shoot you down for – and in some sort of magical @taylorswift universe fever of a dream, I like to think that myself today got to meet my 17-year-old self and gave her a map that led her to where she is today…to which I say, “I’m happy for her” 🥹 (comparing my life to Taylor Swift lyrics…again, I know)

…or maybe all along there was some sort of invisible string tying me to where I am today 🧵while going through my first lengthening, Dr. Jeffrey Young of @stanfordchildrens was performing a fellowship at @limblengthmd and was part of my care team…a few years after his fellowship, he and Carl (on my left) were colleagues together @stanford.healthcare ❤️‍🩹 from being a patient on the operating table to being an advocate sitting across the table with people who have the same drive and passion as yourself just feels full circle 🥰 but overall, the best part of the meeting??? running into my favs aka the Bray’s 🧡🌻

to my fellow patient advocates – I’m sending you cheers, fist bumps, high-fives, hugs, cookies, ice cream, and more this #nationalpatientadvocacyday 🎉 your advocacy, hard work, and dedication to your community don’t go unnoticed! I hope to see and meet (in person) a lot of you next month at #GGSummit22! 🧬

#patientadvocate #advocacy #achondroplasiaawareness #achondroplasiaresearch #dwarfism #dwarfismawareness #skeletaldysplasia #sanfrancisco #california #taylornation #limblengthening #globalgenes #flashbackfriday #foreverataylorswiftstanaccount

• just a little cutie for the gram 🍊 #bigora

• just a little cutie for the gram 🍊

#bigorange #velvetorange #littlerock #littlerockeats #eatlocal #drinklocal #drinkstagram #rocktownvodka #visitinghome #littlerockarkansas #arkansas #arkansasmade

･ next week marks a dozen (12!!) years 🤯😳

･ next week marks a dozen (12!!) years 🤯😳 since I made the decision that completely changed my life 🥹 the #1 question I get is “do you regret it?” and the answer is always a quick “no.” At the time (2010) yes, I repeatedly said, “I wish I had done this sooner,” but had I done so, the experience would’ve been totally different especially when you factor in the internet and social media – in ‘07 or ‘08 (when I wish I had started) I probably would’ve been chatting about it on MySpace with the various “official @mileycyrus backup account” I was friends with 💀 unfortunately for @myspacetom, @zuck came along 👤 and my favorite space on the world wide web became “Chandler in Baltimore” 💜

sharing my experience through #limblengthening, living with #achondroplasia, and my overall life, in general, has been the most amazing and terrifying thing I have ever done. It has connected me with amazing people, given me wonderful opportunities, started my career path, and introduced me to the world of #patientadvocacy…and with that being said, I’m SO excited to be attending the @globalgenes Rare Patient Advocacy Summit in September as a social media ambassador for the event! 👩🏼‍💻 this is my first time attending in person and I’m beyond thrilled! 🤩

come join me and others – from individuals to #healthcare professionals in the #raredisease community for a chance to connect and attend educational sessions 📚 I’m most looking forward to finally meeting so many advocates from other patient communities that I have been connected with on socials for so long in person for the first time 🥰

more information about the event, registration, and #GlobalGenes is available through my link in bio 🧬 make sure to follow along as I share more details leading up to the event 🤗

fun fact: the jacket I’m wearing was my brother’s from when he was around 12 in the mid-90s when we initially started seeking information on limb lengthening 🦋

#patientadvocate #achondroplasiaresearch #dwarfism #dwarfismawareness #skeletaldysplasia #careaboutrare #pas2022 #rarechampions #championsinrare #championsofhope #rarecommunity #patientcommunity #healthcareprofessional #community #socialmedia

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