Personal Choice Is Not Controversial | Kristen DeAndrade
In this My Hero 360 episode, host Kerri Fitzgerald sits down with Kristen DeAndrade to share her experience living with achondroplasia, the most common form of short-limbed dwarfism. Kristen talks about her decision to undergo limb lengthening surgery at a young age and subsequently navigating criticism from her own community. Kristen discusses why personal choice and medical autonomy matter. She also provides education on spinal stenosis, the importance of specialized care, and her mission to improve education and advocacy for individuals living with achondroplasia. This conversation explores resilience, informed decision-making, and the power of individualized care.
Watch part 2 of Kristen’s story.
Kerri Fitzgerald:
Kristen, welcome to My Hero 360.
Kristen DeAndrade:
Thank you so much.
Kerri Fitzgerald:
You were born with achondroplasia, which is the most common form of short-limbed dwarfism. Can you tell me a little bit more about the condition for people who may not know much more than that it results in short stature?
Kristen DeAndrade:
Yeah. Achondroplasia is the most common form of short-limb dwarfism. We have disproportionate…our arms and legs are much shorter than our torso. What a lot of people don’t realize is that along with short stature, there’s a lot of other medical complications that can come along. I’d also like to preface that in saying that every individual’s experience is different. There are individuals who will go through life and have no medical complications, and then there are individuals, like myself, who will encounter some here, some there. Hydrocephalus, sleep apnea, ear infections, spinal stenosis, there’s a wide variety of complications that can arise. It’s really important that individuals are followed by specialists, and I think that’s one of the things that is not talked about too often, how important specialized care is for individuals, not just with achondroplasia, but any skeletal dysplasia.
Kerri Fitzgerald:
Absolutely. We’ll talk a little bit more soon about that personalized care. I want to talk about how at 12 years old you underwent a series of limb lengthening surgeries. I think you actually made the decision when you were 7, you said.
Kristen DeAndrade:
Yes.
Kerri Fitzgerald:
That’s a big decision to make when you are still young and a child. How did you come to make that decision?
Kristen DeAndrade:
It is. I remember the first time I started talking about it, and I had seen news articles. My mom had 2 folders when I was young. They were both green, ironically enough, which is the color for dwarfism awareness, and one was a dwarfism folder and the other was a limb lengthening folder. I loved going through those folders because it was just so interesting. I’m like, “This is me; this is who I am. This part of my journey.” I started looking at pictures of fixators when I was like 7. Then I did a presentation in third grade. We read a book, and it was called “Thinking Big.” It’s about a little girl named Jamie who also lived with achondroplasia, and my teachers were like, “Oh my gosh, Kristen, this is a phenomenal opportunity for you to talk about you, your life.” I kind of was like, “Why do you want me to do that?”
My best friend and I at the time did a whole presentation, and that was the first time I ever talked about lengthening, also the first time that I should have realized that I didn’t truly know what I was talking about because I told everyone that I was going to lengthen 1 arm and 1 leg at the same time, which is not how it’s done. My decision was solidified at that point. My parents gave me all of the information and allowed me to make the decision on my own. I saw 20/20 specials. I read articles. I knew everything about it. Then when I was in sixth grade, that just seemed like the right time. We decided and I remember sitting on the floor of my sixth-grade class and we were watching the 20/20 special and Dr. Paley was in there with a hammer and chisel breaking bone, and everyone was like, “That’s what you’re going to do?” I was like, “Yes.”
I knew it was more than inches. It was independence, and it was functionality for me. The other part of it was that I was going to have to have surgery anyways. My lower legs were actually starting to bow, which is very common for individuals with achondroplasia. Oftentimes, they need surgical correction. Not only was I going to have my legs lengthened, but I was going to have them straightened. A lot of other deformities that I had were going to be corrected.
Kerri Fitzgerald:
It’s beautiful that your family gave you the information, gave you the opportunity to make that decision. How did your parents, your family, and other people in your life at the time support you while you were going through this series of surgeries?
Kristen DeAndrade:
Yeah. Everyone closest to me was totally gung-ho, and they were for whatever I wanted to do. I remember having a going away party before I went off for surgery. I think family members were trying to learn as much as possible about the procedures and just how they worked.
What I wasn’t ready for was the amount of controversy that came from my supposed community. The skeletal dysplasia community, it’s an organization has been around for a really long time. Pretty much since I started talking about lengthening, they told me, “Shame on you.” I had adults in the community telling me that I was making the wrong decision and how dare I, which was horrifying for a 7- to 11-year-old to hear something like that.
At the same time, I wasn’t about to let someone else dictate what I was going to do with my life. I guess what I wasn’t prepared for was the longstanding controversy. Sometimes you think like, okay, they’re going to be resistant to this for a little while and eventually they’re going to open up and be more accepting of it, and that’s not how it’s been. We can talk about this too, now with the rise of pharmaceuticals, specifically we have 2 medications on the market for achondroplasia. There’s controversy surrounding that. I was young, but I was very passionate about personal decision-making and it being just that, a personal decision.
Kerri Fitzgerald:
You talked about independence and freedom were a driving factor behind your decision.
Kristen DeAndrade:
Yes.
Kerri Fitzgerald:
How did you gain independence through this choice that you made?
Kristen DeAndrade:
Oh my gosh. When I was younger…I mean, you think of a public bathroom. I couldn’t reach to wash my hands. I couldn’t just walk in and sit down on a toilet. I had to climb up on a public toilet, not sanitary. Are there ways around it? Sure. I could carry a stool around for myself and people choose to do that and that’s amazing. That’s not the life I wanted for myself. It was a matter of being able to take care of myself in the bathroom. I knew when I started driving, going through toll booths or whatever it may be. I mean, granted now we have technology so that doesn’t exist. But to sit in a car and be able to drive and not use pedal extensions. Then there was the whole medical side of it.
Something told me because I was experiencing the bowed legs and I had some upper extremity deformity as well, that this was just the right decision for me and it was going to improve my quality of life down the road. I can honestly say that after a more recent surgery, I patted my 14-year-old self on the back for having my arms lengthened because I could wipe my own behind in the bathroom, and that’s something that’s very important to me. I don’t choose to walk around with tools to help me adapt, which there’s nothing wrong with that. It’s just a personal decision and it’s not for me.
Kerri Fitzgerald:
Yeah. You talk very openly about that, that your decisions are yours and you respect other people if they make different decisions.
Kristen DeAndrade:
100%.
Kerri Fitzgerald:
I think that’s applicable to a lot of different conditions that people may live with. What do you want to impart on the larger medical community about the importance of autonomy and personal choice in living your day-to-day life?
Kristen DeAndrade:
Yeah. I mean, it’s not even just in the dwarfism community. I mean, we all have different experiences and we’re all going to choose different paths. The main thing is respect. Not only that, but to provide resources for individuals and their families to make informed decisions. When I was making the decision to lengthen, information wasn’t widely available. Granted, I’m not going to age myself, but we’re also talking back to before the World Wide Web. It was photocopied magazine articles and things like that. In today’s age, there are parents of kids with skeletal dysplasia who have no idea about spinal stenosis. They have no idea about these medications that exist, which we hope to lessen the complications that come along with achondroplasia. I think it’s just very important that we respect individual choices and allow everyone to get the proper resources at the same time.
Kerri Fitzgerald:
Yeah, absolutely. You talked about at the time you felt dismissed by your community, you felt judged. Do you think opinions have changed now compared to when you made the decision when you were 12?
Kristen DeAndrade:
Opinions have changed, not much. There’s still quite a bit of controversy, which is obviously why I do what I do today. With the World Wide Web and even social media, there’s this extension of community where people are able to get these resources and personal experiences, like you guys talk so much about stories and I always say that scars are stories meant to be shared. I think we gain a lot of power and insight from that, but at the same time, you’re going to notice when you look up information for limb lengthening or Yuviwel or Voxzogo or what any of the other trials that are happening right now, there’s going to be a lot of controversy. You see it in the Facebook groups and it’s a little disheartening because for me, I have a really hard time understanding how a group who is so different from and sticks out from society and all they want is to be accepted from society, they won’t accept the individuals in their own community. I think that for me is the hardest thing to understand.
Kerri Fitzgerald:
Yeah, absolutely. We’ve talked about the limb lengthening. You mentioned these treatment options that are available. Can you just educate a little bit more on what those options are and when they became available for this community?
Kristen DeAndrade:
Yeah. BioMarin, their drug Voxzogo became available I think around 4 years ago. I think it’ll be 5 years in November. Then Ascendis has Yuviwel, which just was approved by the FDA. Voxzogo is a once-daily injection, and Yuviwel is a once-weekly injection, and both are studied to show an increase in growth velocity of the long bones. However, as an individual, I sit here and say, you can’t tell me that something is going to affect the growth of a long bone and it’s not going to affect the growth of a spinal canal or the ear canal or the skull. I think the biggest thing here is hope, and we hope that it’s going to affect quality of life, not just height. It’s going to be independence over inches. The research, it’s happening. Nothing happens at the drop of a dime. It’s going to take time. The only way that we figure this out is if we try, and this is what these companies and these families that are opting for these trials and to go on these medications, it’s what they’re doing.
I’ve essentially been an experiment my whole life. I was one of the first to undergo limb lengthening and we’ll talk about my latest journey with my spine, but there are those of us, that’s our purpose in this world. Again, we have to keep our eye on the prize. If a daily or weekly injection is going to prevent an individual, a child, from going through what I’ve gone through in the last 10 years, there’s no question that I would say go for it.
Kerri Fitzgerald:
I think part of the point also is options, more choices, more things for families and people to consider in their own unique individual health journey.
Kristen DeAndrade:
Exactly.
Kerri Fitzgerald:
Let’s talk about spinal stenosis.
Kristen DeAndrade:
Oh, my fave.
Kerri Fitzgerald:
It is, I think you told me the leading cause of disability in people with achondroplasia. It’s one of the most common complications that people can experience. First of all, what is spinal stenosis?
Kristen DeAndrade:
Spinal stenosis for an average person is the narrowing of a spinal canal. What most don’t understand, and this includes doctors, is that spinal stenosis in someone with achondroplasia is a narrowing of the spinal canal in a spine that’s already narrowed. Our pedicles are short. The whole anatomy of the vertebrae is different. Imagine a straw and a wrapper, someone with spinal stenosis and achondroplasia, that straw wrapper is just completely twisted and compressing that straw. My boss likes to use the analogy of an Amazon truck going through a tunnel where the tunnel isn’t big enough for the Amazon truck. The Amazon truck is the spinal cord and the nerves and it doesn’t fit and it’s a mess. With spinal stenosis, it’s incredibly painful. You can get weakness and ultimately the number 1 fear is you become paralyzed.
Kerri Fitzgerald:
You almost did become paralyzed.
Kristen DeAndrade:
I did. I did.
Kerri Fitzgerald:
You had to undergo surgery followed by I think 20 more surgeries. What was that experience like?
Kristen DeAndrade:
Yeah. In 2015 I was experiencing some weakness and pain basically from my waist down, and I didn’t really think anything of it. At that point I kind of, I think, laughed and was like, “Oh, I’m getting older. I’m sure it’s fine. No big deal.” Then it started getting worse. I went to a doctor. Now, granted, this doctor was in South Carolina, and they were not a skeletal dysplasia specialist. They diagnosed me with spinal stenosis, but they said, “You’re fine. Go to physical therapy.” This is a doctor telling me this, and so I did. Thankfully, my close-knit group of friends, I actually had a friend who was a physical therapist and I had been working with her. The lovely game of health insurance, I was paying quite a bit of money out of pocket for every visit, and she finally was like, “Kristen, I’m not helping you. You’re getting worse.”
After I had gone through lengthening, I did a lot of advocacy work around lengthening in general and just making sure that individuals knew that this option was available. I had a young woman who I’d known since she was 8 and she was going through her last round of lengthening. She just happened to reach out to me. She was down for an appointment and she was like, “Kristen, how are you? I’ve got my last appointment. I’m so excited.” I told her, “Not good. I don’t know what’s going on, but I’m in a lot of pain.” She says, “Well, that’s interesting you say that because there’s a new doctor practicing down in Florida at the lengthening center. His name is Dr. David Feldman and he’s a spine specialist.” My ears kind of perked up and I thought, “Okay, maybe this is someone that I need to go see.” I made an appointment and drove from Charleston to Florida, the 8 hours by myself, which was a little nutty.
I had had an MRI the year prior. According to health insurance, you can’t get a new MRI until you see the provider in the office. I saw him in the office, and he looked at the MRI that I’d had the year prior, and he was like, “Yeah, you’re in trouble. We need to operate, and sooner rather than later.” He wanted to order a new MRI, and at that point, I felt like I’d let myself down. How did I not know that this was worse than I thought? But again, I was following doctor’s orders. I remember I went in to get the updated MRI a day later, and I could barely lay still. They almost had to sedate me for this MRI. It took 3 hours just to get a full spine MRI.
I was sitting in the Fort Lauderdale airport in 1 of the most uncomfortable wheelchairs and my phone rang and it was a New York area code, and I had no idea who it was, then it clicked and I said, “Oh my gosh, this is probably Dr. Feldman.” I picked up the phone and he said, “Kristen, it is far worse than we ever could have imagined. I need you to go home. I need you to pack a bag, and I need you to turn around and come back.” We were talking on Friday. He said, “I’m going to see you in the office on Monday for a preop appointment and you’re going in for surgery on Tuesday.” I just remember hanging up the phone and immediately bursting into tears. The flight attendants did not even know what to do with me. But at the same time, I was like, “I have to do this. What am I going to do?”
He ultimately gave me 3 options. It was do nothing and I would eventually become paralyzed and live the rest of my life in a wheelchair; give it our best shot and it not work and live the rest of my life in a wheelchair; or give it our best shot and I fight like hell and make a recovery. Obviously, option 3. I literally went home and then turned around, drove again another 8 hours back down to Florida, and met my mom. We had the preop appointment, and I remember kind of trying to figure out what it was going to be like with a fused spine. Basically, my stenosis was so bad that they weren’t going to be able to just decompress me, which is ultimately making more room for the spinal cord, they were going to have to support my spine with rods and screws, which terrified me.
Even though I’d already given Lowe’s and Home Depot a run for their money with the amount of hardware that I dealt with, there was something about being held up like a scarecrow that just did not sit right with me, but I didn’t have a choice. On May 2, 2016, I underwent my first surgery. I woke up and I had residual paralysis on my right side because my spinal cord was so badly damaged. One surgery turned into 2, turned into 6, turned into 22 over the course of 8 years. I like to say basically that my body fell apart. Your spinal cord is the core of who you are. It controls everything, and when you put your spinal cord at risk, it’s a big deal. I don’t think I grasped that. When I was initially given the spinal stenosis diagnosis, it wasn’t like, “Hey, by the way, this is your spinal cord. This is a really big deal.” It was kind of like, “Hey, you’ve got spinal stenosis. Go to physical therapy. You’ll be fine.” That was the gist I got.
Yeah, it’s been a really, really long road, and also one where I discovered that spinal stenosis is the number 1 cause of disability in achondroplasia, and it’s also a lot more common than I ever came to understand. After I had my first spine surgery, I basically kind of lost the ability to walk. I had to relearn everything. Then I had to have realignment done. I’ve had both of my knees, both of my hips replaced. Again, I basically fell apart and have been pieced back together. You talk about sharing stories about when things get really dark and uncomfortable, and I was at rock bottom. I was in my mid- to late-20s. My parents were paying my rent. I was forced to move to Florida because if I had renewed my insurance in South Carolina, they weren’t going to cover me in Florida, and obviously I had found the doctor that was going to help me and so I wasn’t going anywhere.
I quickly moved to Florida. I was on disability, I was on food stamps, and no one imagines that they’re going to be there in their mid- to late-20s. I was a yoga teacher, I was focused on my writing and all of that came crashing down. It was really, really dark. I mean, there were definitely days where I just didn’t think I could do it anymore. Honestly, I can say that it was because of my medical team that everything turned around. I had an appointment, Dr. Feldman and his PA, Tiffany, who had been with me since day one, basically said, “Listen, we know that this is really difficult. We know, but we don’t. You can’t give up. We’re not going to give up on you, so you can’t give up on yourself.” Being the emotionally volatile person that I am, I immediately burst out into tears and decided, “Okay, if they’re not going to give up, then I can’t either.” That turned everything around.
Kerri Fitzgerald:
Finding the specialized care, finding a team that is very trained in working with patients who have achondroplasia compared to the provider who told you, “Oh, just go to PT.” I mean, I imagine that’s a big theme that people encounter is encountering medical professionals who do not know how to treat people with this particular condition.
Kristen DeAndrade:
Yeah. That’s one of the biggest things, and we can talk about that too with the Foundation is we aim to educate healthcare providers, but gratefully we have centers across the US who are specialized in skeletal dysplasia, and I always tell parents and families, that’s where you need to go. If you can’t get there every year, at least go for guidance and have doctors. A really good doctor will be in touch with another doctor and advise how to get the best medical care possible. Specialists are everything. It’s so important. How do we get specialists? Well, we need education in the medical field, and so that’s one of the things that I’m also super passionate about is just making sure that doctors understand what is skeletal dysplasia. Yes, we need specialized care. There are only certain doctors that treat this and help manage the complications that can arise throughout the United States and the world for that matter.
Connect with Kristen and the Little Legs Big Heart Foundation:
https://www.littlelegsbigheartfoundation.org/
https://www.instagram.com/littlelegsbigheart/
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