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hi, I’m chandler

patient advocate, speaker, communications pro & social strategist

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@chancrews

･ can’t let this month pass without recognizin

･ can’t let this month pass without recognizing some of my favorite people 💙 October is National Physical Therapy Month.

10 years ago, I never could’ve imagined the mark these people would make on my life.

Over the years, I have spent countless hours laughing, crying, being a smart ass here and there (they still like me 😉) and making unforgettable memories.

Dr. Standard was right when he said to me before my first surgery that ‘it’s the physical therapists that deserve the credit. You’re going to have to work with them and build a connection. If you can’t work with them, then this is going to be really hard.’

I’ve always seen them as my biggest advocates and strongest supporters. They show you the meaning of tough love.

I’ve never respected anyone more than those who can call me out on my b.s. and hit me with a harsh reality.

love y’all sooo much 💗 not all are pictured, but know I love each of you just the same 🥰 @pace_doctor, I don’t think we even have a photo together 🥺

#physicaltherapy #physicaltherapymonth #pti_ar #choosept #achondroplasia #dwarfism #dwarfismawareness #dwarfismawarenessmonth #skeletaldysplasia #orthopedics #limblengthening #standardized #iSTANDcorrected

･ I interrupt my peach filtered feed to bring yo

･ I interrupt my peach filtered feed to bring you this unscheduled #dwarfismawareness post.

I don’t mind when my photos are shared. It’s why I’ve been so transparent about my experience for the past 10 years and why I consent to Dr. Standard and other organizations and publications to share my photo(s). That’s not the issue.

The issue is my photo(s) are being used here to spread misinformation about a #medical procedure that not only bettered my life, but also benefits those who are born with congenital conditions such as #CongenitalFemoralDeficiency, #ProximalFemoralFocalDeficiency #FibularHemimelia, etc.

I don’t want to post on their behalf, but I do want to mention that these patients face the same backlash and scrutiny as those with #dwarfism who opt for limb lengthening. When videos like this are made, it makes it even harder for parents and patients to find the necessary resources they need to correct and manage their child’s condition. You will never know what these patients and families go through when consulting with orthopedists - it’s hard and emotions are high. It’s why there are very FEW institutions in the US that perform these procedures —
･ @limblengthmd / @lifebridgehealth
･ @paleyinstitute / @stmarysmc
･ @limblengthening / @hspecialsurgery (just to name a few 🤷🏼‍♀️ NOTE: these are institutions that treat those with congenital conditions in addition to cosmetic lengthening. There are other institutions in the US who primarily perform cosmetic lengthening)

So when you see a video or post like this, keep in mind that it’s never about just height for these patients.

I also want to note that this isn’t a dig to @drkaranrajan. It’s simply a patient reacting to a limb lengthening video and providing her perspective.

#achondroplasia #achondroplasiaawareness #achondroplasiaresearch #dwarfismawarenessmonth #skeletaldysplasia #bonedysplasia #orthopedics #CFD #FH #PFFD #limblengthening #itsathing #iSTANDcorrected #standardized #patient #patientadvocate #patientadvocacy

･ oh my gourd, plz don’t point your fingers at

･ oh my gourd, plz don’t point your fingers at me for sharing another baby photo 😅

A *little* #tbt to commemorate not only the first of October, but the start of #dwarfismawareness month as well. as most of you are well aware, I have the most common form of dwarfism, #achondroplasia. (see previous post)

Over the past two years or so, I’ve really stepped into the role as a patient advocate. Honestly, it’s something I’ve been doing for the past decade, but just didn’t realize it was actually a thing. As a patient advocate, it’s my role to not only spread awareness, but to also facilitate communication between researchers, physicians and patients.

I’m really not one for the whole, “I’m just small, that’s all” or “love a little” mantras. Having #dwarfism is having a medical diagnosis. It’s not just being short and it never will be (issues associated: ear tubes, foramen magnum narrowing, spinal stenosis, limb deformities - just to name a few) And not only have I never had an issue with my family and friends not loving me due to my height, but I’ve also never felt the need to advertise my height in order to get people to love me or like me (ironically, I’m “not liked” by people because I did change my height, lmao. it’s whatevs.)

Throughout the rest of the month, it’s my mission to spread awareness focused solely on information, research and developments surrounding achondroplasia.

As always, I’m completely open to answering any questions anyone may have on anything - seriously, I’m not modest at all.

🦋

#achondroplasiaawareness #achondroplasiaresearch #fgfr3 #awareness #dwarfismawareness #dwarfismawarenessmonth #skeletaldysplasia #bonedysplasia #october #orthopedics #limblengthening #patient #patientadvocate #patientadvocacy

･ 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

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