By Josh Saunders
A woman with bones so fragile a fall could cause them to break defies doctors who believe she should be in a wheelchair by strutting around in HIGH HEELED STILETTOS
Lauren Ruotolo, 41, from Manhattan in New York, USA, has McCune Albright Syndrome – a condition that causes her bones to fracture more easily and to grow in an abnormal way, as well as hormone and other problems.
The condition affects one in 100,000 people and during Lauren’s childhood meant she would regularly need full-body casts to help her broken bones to recover.
At five-years-old she defied doctors who advised her to start using a wheelchair full-time in favour of daily three-hour physical therapy sessions in the hope of saving her mobility.
Walking became an ‘obsession’ for Lauren and now despite her bone fragility, she can walk miles on a daily basis in high heeled stilettos thanks to her exercises.
Doctors have declared it ‘a miracle’ that she is able to stand let alone walk, due to her pelvis being twisted at a 90-degree angle and both hips deformed.
Lauren, author of Unstoppable in Stilettos, said: “Looking at scans of my body I should be confined to a wheelchair or a bed, I shouldn’t be able to walk or do anything at all.
“It’s like I have superhuman powers, my bones are structured different, my pelvis is twisted on a 90-degree angle and both my hips are deformed making me just over 4ft tall.
“Doctors wonder how I’m able to stand let alone walk in high heeled stilettos on the streets of New York but it’s all because of the physical therapy I’ve done from an early age.
“At the age of five, my therapist told me I had the choice to either be in a wheelchair for the rest of my life or to keep up with muscle strength training,
“The thought of not walking and being able to run around with friends was not something I could accept even then, so in my mind there was no other way.
“Walking became my every day job, it became part of my education, it was my gym, my afterschool activity, it was a lifelong decision made by a child.
“I’ve never regretted that decision and now at 41-years-old, I am able to walk everywhere with crutches because I’ve never given up my physical therapy,
“I walk around everywhere, even wearing high heeled stilettos, which are comfortable for me and evens out the two-inch difference between my right and left leg.
“If I hadn’t kept up all of the activity I would have been in a wheelchair, completely crooked, I don’t know what my life would have been like today.
“I want to get the word out there, just because I was born differently and have a rare disease, it shouldn’t mean that I can’t live my life to the fullest.”
Lauren was two-years-old when she was diagnosed with the McCune Albright Syndrome after fracturing her femur from slipping on a wet floor and getting her period at nine-months old.
She said: “I could break a bone at any point, since I was a child I’ve broken my femur eight times, ankles, toes, torn ligaments, had my thumb in a cast and more.
“Between the ages of five to nine, I would spend at least eight weeks of every year in a full body cast going back and forth to the doctor.”
Over the years Lauren’s mobility reduced, which saw her go from a child who could freely play outside to needing to be careful and using a walker.
Doctors gave her the choice of letting her mobility deteriorate by using a wheelchair or battle with physiotherapy every day.
Lauren said: “I went from being able to run anywhere I wanted, to using a walker and crutches with doctors telling me the safest thing was for me to be in a wheelchair.
“Even as a child, having my mobility taken away from me was not something I was keen on and started working with different physical therapists.”
Through determination Lauren has been able to continue walking, but other complications including from the condition still affect her on a regular basis.
Lauren said: “Due to the way my bones grow, all of my organs are pushed upright, so my spleen, kidneys and other organs are displaced or squished together.
“Growing up, I also had hormonal issues, I went into menopause at nine-years-old so was on medication to reverse that.
“I was a child but my body was going through changes a 50-year-old encounters.
“The hardest parts of the disease are the early onset of arthritis and my bones are very sensitive due to my hormones.”
Despite this, Lauren is determined not to be defined by her condition and proudly walks around New York in high heels.
She’s starting her own shoe-line ‘Unstoppable by LaurenJae’ out this fall, making her signature high-heels and donating funds from the profits to research rare diseases.
Lauren now travels the world meeting parents of children with McCune Albright Syndrome and raises awareness of the condition at conferences.
She said: “It would be easy for me to be depressed and upset, but I choose to love myself for who I am, what I represent and how I can help others.
“I’ve been able to travel globally speaking about my condition, I hope to inspire parents of children with this condition.
“I’m proud that I’m different, I think people need to embrace uniqueness rather than letting it hold them back.”