Ambassador Stories
 • 
May 10, 2022

I Will Always Have Dwarfism

Featured imageKristen is smiling directly at the camera, trees behind her.
For me, undergoing a controversial treatment like limb-lengthening was another opportunity to use my voice.

Kristen DeAndrade became an advocate before she turned 10. When her third grade teacher taught a book called Thinking Big, about a little girl with achondroplasia, the teacher encouraged Kristen to share her own experiences with the class. For the first time, Kristen understood what it meant to stand up for herself. At 12 years old, she underwent a limb lengthening procedure, a decision that some within the achondroplasia community consider cosmetic. Kristen, however, has no regrets, and has continued to write about her experiences with achondroplasia, most recently in her 2019 book, Little Legs, Big Heart: One Girl's Journey of Acceptance.

I had a normal childhood. It wasn't until first grade that I really began to notice that I was different, and that was because I had my first instance with bullying. I remember being a child and just thinking to myself, “What do I do? Do I say something? Do I act like it didn't bother me?” I knew the situation was not one that anyone should ever have to deal with. So I told the teacher, and I'm glad that I did. She pulled the two boys that were involved aside and told them she had no tolerance for bullying and name calling. And that was it. 

In third grade my class read a book called “Thinking Big.” It was about a little girl named Jamie, and she had achondroplasia. My teacher saw that as an amazing opportunity for me to speak to the class about my own experience of living with achondroplasia. So my best friend and I actually made a movie about it — I answered a bunch of questions and did a comparison between Jamie and myself. That was a pivotal moment, because I felt very seen. It was also the first time that I'd ever really stood up for myself or spoken out, using my voice.

It's also the first time that I ever had talked openly about limb lengthening. It was something that my mom had found through research. She was very open with me. I was a very mature child. We started talking about it, and I knew it was something that I wanted to pursue. I was super active — I did softball, cheerleading, swimming. I was a skier. I didn't really let anything get in my way. But I knew also that down the road, once I got older, things were going to become more challenging.

So when I was 12, I underwent limb lengthening. That was 24 years ago. It's done a lot differently now. But then it was three procedures over the course of four years. I gained 11 inches in height. I was walking straighter, had less pain. There were so many things that went into my decision to undergo it. It’s viewed by many in the achondroplasia community as being cosmetic. But I think when function and independence come into play, you can't call a procedure cosmetic. Knowing that I was dealing with so much controversy, having that procedure was kind of another opportunity for me to use my voice. I started doing a lot of writing, and I wrote letters to editors because there were newspaper articles that kind of shamed limb-lengthening procedures. I have no regrets. I would do it again in a heartbeat.

I grew up, went off to college in South Carolina. In 2015, I started experiencing signs of spinal stenosis. There's a lot of discrimination in the medical world, just because there's a lack of knowledge when it comes to treating individuals with achondroplasia. I went misdiagnosed and mistreated — actually, untreated — for almost a year. By the time I found the surgeon that helped me, I was essentially paralyzed. In 2016 I had to move to Florida, where I underwent 12 different surgeries over the course of about two and a half years just to keep me on my feet. I'm recently recovering from a knee replacement.

Achondroplasia is just one of these diagnoses where it is lifelong. You never know what's going to come up. It's super important to have a medical team that you trust and I'm grateful to have that.

I still feel very ostracized by some of my own community. The argument is that those of us who choose to undergo lengthening are unhappy with who we are — we want to change ourselves, we don't want to have dwarfism. I will always have dwarfism. There's absolutely nothing that can ever change that. I am a woman living with achondroplasia and it's unfortunate that these people think that it's okay to judge and criticize when it's a personal decision. I would never, in my wildest dreams, ever look at someone and criticize them for choosing not to undergo lengthening, or not to undergo any sort of medical treatment. It's a very personal choice. 

Writing a book has always been something that I wanted to do. When I was undergoing treatment for my spine, I had kind of come to a point where I was living as an adult but not financially independent, not working. I needed something to fill that void. It was the perfect time. I always told myself I didn't publish a book to be famous. I wasn't going to get on the New York Times best seller list. I told myself that if one person read it and changed their views on dwarfism, or they were able to relate or learn something, that was my win.

I've been an advocate for a long time — since I was a kid. I think that there is power in storytelling, when you’re able to relate to someone. I found AllStripes through social media, and I'm willing to do whatever I can to erase these boundaries that so many people create based on disability and differences. If I can do that by sharing my story, then I'm all in. 

If you have been impacted by
achondroplasia
,
learn more about the benefits of joining AllStripes
by visiting our
achondroplasia
research program page.