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Student embraces rare condition after spending a decade in hiding
After hiding her differences for nearly a decade, a student has embraced the rare syndrome that caused her leg to double in size and foot to swell nearly five full shoes sizes larger.
Lindsay Passodelis, 23, from Allison Park, Pittsburgh, USA, has CLOVES, a genetic mutation that affects 200 people worldwide, causing tissue overgrowth, fatty tissue deposits and more.
As a baby, doctors doubted whether she would be able to walk due to how uneven her legs were and feared she would struggle with balance.
She first started surgeries on her foot and toes at the age of three to help maintain her mobility, later progressing onto operations to halt the growth of her tibia and fibula.
Despite being supported by friends and family, she knew people stared and would make fun of her limb difference. She would hide her larger leg behind the smaller one in images and would crop her lower body out from pictures to avoid drawing attention from the age of 14.
But since blogging about her experiences and attending conferences for CLOVES Syndrome, she felts the need to become a role model to others.
Lindsay, a social work masters student, said: “My right leg is almost double the size of the left one in width, but in length it isn’t as different now as they have evened out.
“But the right foot is a size 15 and then a size E, which is a wider version of the shoe, while my left foot is a size nine and a half.
“I had surgeries to even out my legs growing-up, so that I didn’t walk with a limp and I used to try to do anything I could to be less noticeable.
“It was hard as my leg is an obvious part of my body, so in pictures I used to crop my legs out or would stand with my left leg covering the right one.
“I did all I could to hide it and tried not to be affected by anyone staring, fortunately if my friends saw anyone they would put themselves in front of me like a barrier.
“Growing-up, I couldn’t wear the shoes I wanted to in high school so had to stick to the one type of sneaker that I thought were ugly. It was hard because I couldn’t wear high heels or anything girly, which did take a toll on my self-esteem and left me feeling isolated."
“In high school, I never had a boyfriend or got asked to the school dances aside from prom, and at the time I thought it was because of my differences."
“But once I got to college, I started embracing my disease and want to help younger kids, I’m try to become a role model to a lot of other people with the syndrome. I stopped hiding my leg once and started to feel more confident, I was finding myself, where I was going in life and knew I wasn’t going to hide anymore."
“Now I won’t runaway or fear people talking, whispering or laughing, instead I will confront them and let them know what they are doing is hurtful."
“I have embraced who I am and the defining part of me, it’s a big part of my life. By choosing to own it, I’m not hiding who I am anymore.”
Lindsay’s limb difference was noticed at birth, as well as other symptoms including a birthmark and a protruding vascular malformation that stuck out from her chest.
Lindsay said: “It was very noticeable when I was first born, I had an enlarged right foot and leg, as well as some disfigured toes.
“At first, doctors doubted whether I would be able to walk with such uneven legs, but I could walk and was fine, so actually we were very lucky that it wasn’t too severe.”
Growing up, Lindsay had surgeries to halt the excessive growth of her right limb, having surgeries to target her foot and toes, knee joint, tibia and fibula.
At 14-years-old she was diagnosed with CLOVES Syndrome.
It was previously thought she had Proteus Syndrome, more commonly known through Joseph Merrick, muse for the film The Elephant Man.
CLOVES is a term covering a variety of ailments and stands for Congenital, Lipomatous, Overgrowth, Vascular Malformations, Epidermal Nevi and Spinal/Skeletal Anomalies and/or Scoliosis.
Lindsay said: “I had a team from the children’s hospital following me since I was born and after I turned 14-years-old, my mom came home with a packet of information."
“I was so excited because before I was diagnosed I thought I was the only person in the world to have the syndrome. I felt really alone so it was great to finally have an answer and know there were others like me.”
She started attending conferences for CLOVES Syndrome, where she started to re-evaluate her thoughts and over time, found confidence in her unique differences.
Lindsay said: “Meeting other parents and people with CLOVES at a conference, was really where I started to embrace it more and felt confident."
“I started blogging, which became a really big release for me, if someone said something really mean or I found it hard to cope I would keep a journal."
“It turned into a way of celebrating and overcoming the experiences I had been through and to give other families hope too."
“I started posting pictures of my foot without my socks on CLOVES awareness day, so that other people could see what it looked like and get the reality of what life is like.”
Now, far from the days where she would cover her leg or manipulate images to hide her right limb, Lindsay now embraces her difference instead.
She also accepts and answers the questions of others about the syndrome instead of cowering away, something which has altered her outlook.
Lindsay said: “Living with a chronic disease like this, you know it won’t change, and I no longer dwell on that fact. I don’t want to change who I am. I will have to live for the rest of my life with this, so I may as well look at it as something positive and embrace it."
“Now I wear short dresses a lot more than I used to and when people stare at me, I’m not ashamed or embarrassed at all”
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