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hi, I’m chandler

patient advocate, speaker, communications pro & social strategist

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@chancrews

･ it’s #growthawareness day! this year, I par

･ it’s #growthawareness day!

this year, I partnered with #AscendisPharma to invite patients and families of children with achondroplasia to share insights, experiences and knowledge about children’s growth using #Together4Growth to share our own personal stories.

for the past decade, I’ve been sharing about my experience with limb lengthening. and although lengthening is an alternative to achieving growth, it does not change the genetic mutation that causes #achondroplasia. (ACH)

🧬 ACH is caused by a mutation of the #FGFR3 gene.

👶🏼 1/25,000 children are born with ACH.

👩🏼‍🤝‍👨🏻 80% of children with ACH are born to average stature parents.

🦴 it starts in the bones. our bones begin to develop in utero and continue to grow until adulthood.

🤔 due to the mutation of the FGFR3 gene, it makes the bones grow at a slower rate and makes them think they have fully developed when they have not.

🧠 although height and disproportion are the most obvious feature of an individual with ACH, it also impacts other areas in the body such as the nervous & respiratory systems.

❤️ when it comes to achondroplasia, it’s not just “being small, that’s all.” everywhere we grow {meaning everywhere the FGFR3 gene is} in our bodies, we grow differently than the ‘average’ person.

🌻 it’s more than height. the most important thing that doctors, patients, and families want to achieve is health over height.

📊 your height CAN impact your health.

🔎 For more information, you can sign up for Ascendis Pharma updates related to children’s growth disorders at together4growth.com (Link in bio)

#achondroplasiaawareness #dwarfism #dwarfismawareness #skeletaldysplasia #limblengthening #height #growthdisorders #growthawarenessweek #endocrine #pediatrics #orthopedics #mygrowthmyhealth #advocate #advocacy #patient #patientadvocate

･ at the beginning of quarantine, I moved and it

･ at the beginning of quarantine, I moved and it took me awhile to get a couch and last week, during the busiest week I’ve had all year, I finally got my couch and it’s pink!! 💗 given the time and energy it took to get this beaut, I’m probably going to post about it a lot...we’ll see 🤷🏼‍♀️ also, I’ve been obsessed with this rug for almost 3 years and I finally got it 🥰 now I just need some cute wall decor and more pillows ✨

{couch: @wayfair Everly Quinn Cardigan Reversible Modular Sectional in Blush / lamp: @athome FL 64 Gold ARCW / rug: @athome Venice Border Multicolor Rug / throw: @target Project 62 Shine Chenille Throw Blanket in Neutral}

#wayfair #wayfairathome #athome #athomestores #target #targethome #targetstyle #project62 #pinkcouch #apartmentliving #apartmentstyle #apartmenttherapy #smallapartment #bachelorettepad #livingroomdecor #livingroomdesign #decor #pinkcouch #goldaccents #thespruce #sunday

･ if you can’t find the words to say, refer to

･ if you can’t find the words to say, refer to a @taylorswift ballad or two ~

today officially marks the end of a decade, but the start of an age. 10 years ago, I broke bones and mended them back together with the love and support of my family, friends, physical therapists, Dr. Standard and his team.

everything from that day forward has exceeded any and all expectations I ever could’ve imagined. it’s more than just gaining a few inches in height.

it’s being 18 and living on the college campus and not having to use a scooter to get from class to class on time.

it’s being 21 and going out with my friends and not having to carry a wand in my purse to wipe myself when going to the bathroom.

it’s being 23 and having face-to-face conversations with every new person I meet.

it’s being 25 and being on my own in a city by myself without my parents wondering if my legs are going to get me across the street safely.

it’s being months away from turning 27 and using this platform I’ve created to be an advocate for patients with the same condition as me who may want the same treatment as me or who may be interested in the new treatments that are developing.

the past ten years have been happy, free, confused, and lonely in the best way. while also at times miserable and magical.

reminder: there’s only one of ME. which means, my decision and my story is not the same as someone else with achondroplasia. my platform is used to advocate. not influence. 💕

#achondroplasia #dwarfism #skeletaldysplasia #achondroplasiaawareness #achondroplasiaresearch #dwarfismawareness #patientadvocate #patientadvocacy #limblengthening #itsathing #drshawnstandard #standardized #iSTANDcorrected #orthopedics #pediatricorthopedics #LEGiversary #LENGTHiversary

･ you must make a choice to take a chance or you

･ you must make a choice to take a chance or your life will never change 🦋 10 years ago today, I made the choice that gave me the chance to start living the life I had always dreamt ☁️ I knew I could (literally) change the way I wanted to see the world and how I wanted to live it, but it never would’ve happened had I not made the choice and taken the chance ✨ forever giving this guy two thumbs up for making the dream a reality 👍🏻👍🏻

#achondroplasia #dwarfism #skeletaldysplasia #achondroplasiaawareness #dwarfismawareness #patientadvocate #limblengthening #itsathing #drshawnstandard #standardized #iSTANDcorrected #orthopedics #pediatricorthopedics #LEGiversary #LENGTHiversary

･ #tbt: six years ago today on national televisi

･ #tbt: six years ago today on national television, I expressed my excitement for buying pants off the rack 👖 no, this is not an outtake (see second slide) 😆

yes, I still get just as excited when buying clothes that fit ☺️ it’s the *little* things like buying clothes off the rack - no alterations needed ✂️ ordering at a coffee counter ☕️ and communicating face-to-face 👥 that some may take for granted, but I never will 💗

thank you so much @markmullennbc7 of @nbcsandiego for sharing my experience of living with #achondroplasia and the controversy that surrounds #limblengthening for those with #dwarfism.

#throwbackthursday #dwarfismawareness #skeletaldysplasia #patientadvocate #patientstory #standardized #iSTANDcorrected #sandiego #california #chansays

･ #challengeaccepted, @donnabrussell @alexbray31

･ #challengeaccepted, @donnabrussell @alexbray31 🤍

confidence comes from within. it’s what’s on the inside that counts. almost a decade ago, I made the decision to make my body align with how I felt on the inside - while also correcting the physical deformities that were actually begging to cause me physical pain.

I didn’t change who I was. I changed my body and made it fit the way I felt on the inside.

on the inside I was confident, but then my body would remind me that I couldn’t buy pants off the rack, that I didn’t have straight legs in ballet, and that I couldn’t talk to my peers face to face.

I did change. for myself and myself only. no one else’s input mattered. to me, that’s #confidence. I’m confident knowing that my body is now aligned with how I feel on the inside.

it’s important to remember that what makes one feel confident, may not be the same for everyone else. and that no matter what, we support ALL of our sisters ♀

#womenempoweringwomen #womenempowerment
#womensupportingwomen #thefutureisfemale #strongwomen #achondroplasiaisbeautiful #achondroplasia #dwarfism #patientadvocate #advocacy

Copyright © 2020 · Chandler Crews · Hearten Made ⟡

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