Advocacy
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It ’ s not about pleasing others or fitting into a mold society expects from you . It ’ s about embracing who you are , flaws and all , and living authentically .
~ Kristen DeAndrade with Kristen DeAndrade
Can you share a pivotal moment that shaped your journey as an advocate for people with dwarfism ?
A pivotal moment in my journey as an advocate came in third grade , when our class read Thinking Big , a story about a little girl named Jamie who also had achondroplasia . My teachers saw this as an opportunity to empower me , encouraging me to share my own experiences with the class . I compared my life with Jamie ’ s , highlighting both the similarities and differences between us . That was the first time I realized the impact of using my voice to educate others , and it sparked my passion for advocacy and breaking down barriers , set by society , for people with dwarfism , disabilities and differences .
What challenges have you faced in raising awareness about dwarfism especially as limb-lengthening procedures are frowned upon in the dwarfism community . What keeps you motivated to continue the fight ?
Advocacy is definitely not without its challenges , especially within the dwarfism community , where procedures like limb-lengthening are often frowned upon . I learned early on that I wasn ' t going to be everyone ' s cup of tea . But as the saying goes , if everyone agrees with you , you ' re probably not pushing the right buttons . Since day one , I ' ve been going against the grain , and people always have something to say . I still remember being told at 12 years old , " Shame on you for trying to undo diversity ." It was shocking then , and it ' s still happening now .
With the recent FDA approval of VOXZOGO and ongoing drug trials for achondroplasia , I realized how many people are still receiving inaccurate information . I couldn ' t sit back knowing that someone like me , or new parents , were being shut down when asking questions about medical options that could improve quality of life . That just isn ' t right . Life with dwarfism is hard enough — we ' re constantly navigating a world that wasn ' t built for us , and dealing with mediadriven ignorance . The last place we should feel excluded from is our own community .
For me , this fight isn ' t personal anymore . I ' ve already made my choices , I stand by them and I have won . It ' s about the future generations , and those in the community who feel like they don ’ t have a voice ; kids , adults , parents and caretakers all wanting to know how to achieve the best quality of life possible when living with dwarfism . Me being loud and relentless , its for them . They keep me motivated . Because there is no “ right ” way to live – it looks different for everyone . And , everyone has a right to accurate information , community , etc .
You ' ve empowered many people to embrace their differences . What advice would you give to someone who is
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