• it’s common knowledge that I have more than • it’s common knowledge that I have more than enough photos with Dr. Standard – however, I think I now have more selfies with Dr. Herzenberg, world-renowned surgeon and selfie king 👑 

it felt just like old times (Save-A-Limb reunions 🥹) this weekend celebrating Dr. John Herzenberg’s retirement. 

my first core memory with Dr. Herzenberg was the day I had my first surgery at @limblengthmd. He came into pre-op and introduced himself, stating he may be alongside Dr. Standard in the OR as my case was pushed back due to an emergency case. if you know me, you know I don’t do well with last-minute changes. However, when Dr. H came into my preop, I felt nothing but comfort and compassion from him.

for the past 13 years now, despite being ‘standardized,’ Dr. H has been a staple in my life medically, personally, and professionally. He’s done so much for me behind the scenes, and I’ll forever be so grateful for it. and for those who attend the annual @achondroplasiaresearch conferences, you may see him there ☺️

it was so great seeing familiar faces this weekend while honoring the LEGendary Dr. H – reminiscing on memories we made together over the years and making plans to make new ones! 💙

#limblengthening #topdoctors #teamriao #BLDC #BLDC2023 #baltimorelimbdeformitycourse #savealimb #orthopedicsurgery #patientadvocacy #patientadvocate #patientcare #achondroplasia #achondroplasiaresearch #dwarfism #dwarfismawareness #skeletaldysplasia
• 13 years ago today, “never have I ever befor • 13 years ago today, “never have I ever before” was what I knew before @taylorswift capitalized off the month of august, and right before being taken back into the OR at @limblengthmd – on this day 13 years ago, I had never been more sure of the decision I had only made 19 (MY number) days prior on 8/5/10

earlier this month, I attended #tstheerastour on 8/5, 13 years to the very day when I first met Dr. Standard and booked my surgery for 8/24/2010

I’ve been a fan of hers ever since around the time I was 13 years old. so much of her music has resonated with me, but even more so during these past 13 years of my life – especially folklore and, more recently, midnights

I can’t put into words what it felt like when she began playing ‘you’re on your own, kid’ as one of the surprise songs at my show. the bridge alone best describes everything I have felt these past 13 years

I’ve always been transparent, but I also set boundaries for myself. when I decided to share my experience, I did so because I knew had there been someone for me to watch go through this when I was 13 and tell me, “you’ve got no reason to be afraid,” everything probably would’ve been much different…but then again, I probably wouldn’t be making this post 🥹 

there’s so much more I have to say, but instagram only gives so many characters – once I get it all down, I’ll let you know 🤍

for now, HAPPY LEGIVERSARY TO ME! 🦋

#achondroplasia #dwarfism #dwarfismawareness #skeletaldysplasia #limblengthening #legiversary #patientadvocate #patientadvocacy #onthisday #erastour #august #yoyok
• it’s 8/05 !!!!! and I’m here to see THE he • it’s 8/05 !!!!! and I’m here to see THE headLINE !!!!!!!!!!!!! 💚💛💜❤️🩵🖤🩷🤍🤎💙

it’s also 1️⃣3️⃣ years TO THE DAY that I made the decision that changed everything for me 🥹

@taylorswift @taylornation #TSTheErasTour #LATSTheErasTour / @haimtheband @estehaim @daniellehaim @alanahaim @gayle @grassodrums @killsweetmax / @eliottnicole @gypsymoonshine @jeslynmusic @melanienyema / @paul_sidoti @amosjheller @davidcook88 @mattbillingslea @maxephronbernstein @sheplaysdepiano @smalltown1 / @natalie_lecz @amandabalen @audreydouglass @janravnik @kamnsaunders @karenschuang @kevin_kid_xs @nat_b_peterson @rastapha @sam_mcdub @sydneymosss @tamiyaxlewis @taylorbanks39 @teetime23 @whyleyy 💚💛💜❤️🩵🖤🩷🤍🤎💙
• MY HEART 🩷 MY HIPS 🍑 MY BODY 💪🏻 MY • MY HEART 🩷 MY HIPS 🍑 MY BODY 💪🏻 MY LOVE – it’s health by a THOUSAND tucks ☺️

officially in my 1000 club era ✨ I’m coming up on my @taylorswift year (13 years!!!) of when I had my first lengthening and fell in love with Baltimore 💜 ever since then, I’ve never taken for granted what my body is capable of and I make sure to take care of the broken bones I mended (x3) and for me, that’s @purebarre_baltimore ❤️

#purebarre #purebarrestrong #purebarrebaltimore #lifttoneburn #LTB #athleta #powerofshe #alo #aloyoga #achondroplasia #dwarfism #dwarfismawareness #skeltaldysplasia #limblengthening #patientadvocate #patientadvocacy #taylornation #tstheerastour #swiftie #deathbyathousandcuts
• butterflies + Dr. Ravi + @dietcoke w/ lime = t • butterflies + Dr. Ravi + @dietcoke w/ lime = the best achondroplasia research conference by far 🥹

this past weekend marked the @chandlerproject’s 5th annual @achondroplasiaresearch conference, @pharmachon 🧬

this year, for the first time EVER, six (!!!!!!) companies: @biomarinpharmaceutical, #QEDtherapeutics, #TYRABiosciences, @sanofi, #AscendisPharma, and @pfizerinc were in the same room as patients with #achondroplasia, parents, caregivers, and physicians sharing about their respective product on the market, failed program, new research, potential new program(s), data, and more. As a patient advocate, I feel it’s so important to hear directly from the researchers and lead investigators behind the science, and not through a second party 💜

thank you to my friend, Sivani Gadriaju, PharmD, who shared her journey of living with achondroplasia and becoming a pharmacist – seriously, how fitting for the event, right?!

the inspiration for ‘pharmachon’ actually came to me years ago (literally right after the first one in ’19), but I wanted to wait until I felt the time was right and this year was perfect – and there was still room for the expert physicians 😉
🧬 Dr. Ravi Savarirayan, @murdoch_childrens
👶🏼 Dr. Janet Legare, @uwmadison
🦴 Dr. Shawn C. Standard, @limblengthmd
💉 Dr. Philippe Backeljauw, @cincychildrens

it meant so much to me this year that four patient advocate groups outside of the US traveled all their way to attend 🩵🧡💚💛
🇦🇷 @asociacionaconar
🇪🇸 @fundacionalpe
🇧🇷 @nanismo.brasil
🇨🇴 @pequenaspersonaslatinas_

I love y’all so much and can’t wait to come visit! 🫶🏻

overall, there are so many cherished moments from the event, but the two that have stuck with me the most are a parent of a six-week-old with achondroplasia who came and said this is exactly what they and their spouse were searching and hoping for 💕as for the latter, see poor quality video, but high quality feels at the end 💐

brainstorming for next year starts soon (pants optional…iykyk)

#pharmachon #achondroplasiaresearch #dwarfism #dwarfismawareness #skeletaldysplasia #patient #patientadvocacy #patientadvocate
• the raddest dad 🧡 no matter what I do, good • the raddest dad 🧡 no matter what I do, good decisions or bad 🥲 he’s always so proud of me and never lets me forget it 🥹 happy #fathersday !! ***PEACE*** ☮️
• 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
• 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
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May 8, 2019 • ACHONDROPLASIA, LIMB LENGTHENING

ICLL Patient Story

I get asked a lot about who’s my doctor, where did I go for my lengthenings, what was the experience like, and so on…You can check that out by reading my patient story on the International Center for Limb Lengthening website or down below 🙂

Chandler, a patient with achondroplasia–a form of dwarfism, started her lengthening treatments at the International Center for Limb Lengthening at the age of 16. She started at her mature height of 3’10” and now is over 4’11, and she gained 4 inches of arm length.

She shares, “Before coming to RIAO (Rubin Institute for Advanced Orthopedics), I always knew that limb lengthening was an option for me. However, I always pushed it off every year until finally I made the choice one summer to have it done. I was 16 years old and tired of physically struggling through daily tasks. My concerns were that it was going to be a long process and I would miss out on so much of life. Looking back, 7 months out of life is nothing compared to a lifetime of the life you want and worked hard for.”

When asked how her life has improved since receiving treatment at the International Center for Limb Lengthening, Chandler shares, “Besides my health, everything in my life has improved…. I was only 3’10” and 16 years old when I had my first surgery at RIAO. I was already at my full grown adult height for someone with achondroplasia. When standing next to most of my peers, my face was at the height of their hips. Being able to just do simple everyday things was a struggle for me—using public restrooms independently, driving a car, walking city blocks, washing my hair. But the one thing that stands out the most is being able to have face-to-face communication with people now. It’s something I never even thought about until it happened. My surgeries took me from 3’10 to 4’11-3/4”. I’m almost 5 feet now and over a foot taller! Being able to just walk up to someone and communicate with my face in the same range as their face has been the biggest game changer for me. My treatment at RIAO didn’t just change me physically, it changed everything for me.”

When asked to share more about her experience with her doctor and the Rubin Institute staff, Chandler answers, “It was by pure luck that I found out about Dr. Standard after seeing him in a TV news special…. Dr. Standard is the first doctor to ever come in and talk to me and not just talk about me to my parents. I hear it from the parents of young kids as well; he makes sure that every patient at any age knows what’s going on and lets them be in control of their treatment.”

She continues, “Dr. Standard has great compassion and has never left me with unanswered questions or doubts. One of the first things he ever told me before I had my very first surgery was, ‘It’s easy for me to get the credit because it’s my name, but it’s the physical therapists that deserve the credit. You’re going to have to work with them and build a connection. You will see them every day, and they will know more about you than I will. If you can’t work with them, then this is going to be really hard.’ I will always remember this, and it’s so true. I have had the luxury of working with all of the physical therapists at RIAO, and they’re all so incredible at their job. However, it’s no secret that Kym Doll “Miss Kym” is who I prefer and who I work the best with. She has gone above and beyond for me. She always knew when I was having an off day and always reassured me whenever my measurements weren’t the best that it was normal and to be expected. She knew I would want the best (and how much of a perfectionist I was).”

When asked what she would tell someone who had achondroplasia and was considering treatment at the Rubin Institute, Chandler responds, “‘Go to RIAO and meet the team. Trust me.’ Limb lengthening is actually pretty controversial in the dwarfism community and I have people ask me often why I chose to have my surgeries at RIAO and not another center or closer to home. I always say just visit and meet the team and see how you feel. This type of surgery is only performed at a few centers in the world. It’s a big commitment for the patient and their family. It’s hard work, and it’s important to be 100% comfortable with your medical team because you’ll be working together with them to get the best results.”

For more of Chandler’s story, you can read this “Baltimore Sun” article about her lengthening experience. She also shares her treatment journey and resources for people living with achondroplasia on her Facebook page Facebook.com/ChandlerInBaltimore.

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