Voices Across America

Little Legs, Big Heart

Kristen

State: Florida
Congressional District: FL20

Diseases

Bone / Muscle Disease, Genetic Disease, Mental Health, Rare Disease

Issues and Challenges

Kristen has encountered: Access to Expert Providers, Insurance Issues, Medicare / Medicaid Issues, Mental Health Access, Rare / Underserved Disease, Disability, Medical Discrimination

My Story

“It doesn’t matter how long your legs are, you can only take one step at a time.” -KD

My steps throughout life have always been small, backed by purpose and guided by heart. My name is Kristen DeAndrade. I am a woman living with achondroplasia who is an open book when it comes to my journey; literally. I am an author, speaker, patient advocate and founder/director of my soon-to-be nonprofit organization, The Little Legs Big Heart Foundation. I like to tell people that I have a PH-D… in achondroplasia because, well… it is my whole life.

Achondroplasia is a part of me, not the whole story. It's like that persistent guest who just won't leave – disabling, as I like to call it. My journey, decked out with over 30 surgeries and a variety pack of health challenges, is a testament to the hurdles faced by many of us with achondroplasia. But, hey, amidst the challenges, there's been a treasure trove of opportunities, like rocking roles as an advocate, patient coordinator, author and speaker.

Now, I'm owning my role as, ME! Little Legs Big Heart, where I stand as a bridge between the achondroplasia community and the world of medical choices. As an individual who chose to undergo limb lengthening, this is huge. Controversy on the topic of the management of achondroplasia, either by surgical limb-lengthening or the newer pharmaceutical treatments, is not new, but it seems to be boiling over right now. Whether an individual with skeletal dysplasia or a parent or caretaker of an affected child, each is deserving of support and resources to assist in their decision regarding options for potential treatment modalities.

I'm on a mission to be a liaison, a support system, and a voice of reason. I've been through the medical rollercoaster, so I get it – the struggle, the discrimination, the quest for compassionate healthcare. But guess what? There's no one-size-fits-all in our world. The decision to undergo necessary medical treatment, lengthen or embrace drug therapy is personal, and we're here to support whatever choice is made.

Community is everything. There is nothing but strength in numbers and an inclusive community is haven for empowerment, discussions, sharing, and mutual support. Because, let's face it, navigating the medical world as a little person can be tougher than herding feral kittens.

Living with dwarfism can be BRUTIFUL – beautiful and brutal combined. And despite the challenges, I wouldn't change a thing. Standing here, advocating for management options that have been proven to increase the quality of a person's life, that's the beautiful part.

It takes grit, grace, and the will to go against the grain to get here. Skepticism turned into hope when I learned about drug therapies. Hope for decreased complications, more independence, better body proportion, and less pain. If there's a chance to tweak life for the better, count me in. I am ALL in!

Whether you're pro-drug, pro-lengthening, or pro-living little just the way god made ya, let's agree on one thing: kindness and respect. It's all about personal choice, my friends. Parents, include the kiddos in the decision making, even the little young ones. You would be shocked as to how much a two or three year old can understand. Life is a work in progress, and I'm grateful to doctors and industry companies for pushing the boundaries. Onward and upward, my friends.

So remember, it's not about the length of our legs; it's about the depth of our hearts. Love, kindness, sharing stories, advancing medicine – that's the real magic. And we can all do our best to support one another, one step at a time.

My Motivation and Inspiration

Diving into the river of life with little legs and a heart full of determination – that's been my journey. The girl who swam upstream, against the current of societal norms within the dwarfism community. You see, my inspiration and motivation stem from the fact that, as a little girl, I didn't have anyone to relate to. I was a lone fish, navigating uncharted waters, especially when I took the plunge into limb lengthening.

Growing up without a mirror to reflect my experiences made the journey a bit like swimming solo. There weren't many tales echoing my own, and societal norms within the dwarfism community often felt like a strong current trying to pull me downstream. But hey, I embraced the challenge. The absence of relatable narratives fueled my determination to be the voice I wished I had as a child.

When I decided to swim against the current and undergo limb lengthening, it was like setting sail into uncharted territory. No one to advocate for me, no one to share their story and say, "Hey, I've been there too." It was a solo expedition, navigating the complexities of physical and emotional health without the guidance I longed for. That experience, my friends, became the spark for my advocacy flame.

I'm here to be the advocate I never had. My belief in the power of community, the strength in sharing stories, and the importance of personal choice has become the cornerstone of my mission. Because every little person deserves a community, a narrative, and the power to make choices that enhance their quality of life.

I've seen the impact of isolation, the struggle without relatable stories, and the importance of having someone in your corner during pivotal moments like limb lengthening. That's why I'm passionate about building bridges, creating spaces where individuals can find solace in shared experiences, and advocating for personal choices that empower them.

So, whether you're navigating the turbulent waters of societal norms or contemplating choices that could reshape your journey, remember – you're not alone. I'm here, sharing my story, advocating for personal choice, and championing the strength found in community. Together, we're rewriting the narrative, creating ripples of change, and proving that swimming upstream can lead to extraordinary places.

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