Brittle But Not Broken

Osteogenesis Imperfecta (OI), more commonly known as brittle bone disease, affects approximately 1 in 15,000 people.  A genetic disorder whose impact on the bones can range from mild to severe and is caused by defective genes which compromise how the body makes collagen.  Collagen is a protein that helps to strengthen bones.  Subsequently, a person diagnosed with OI can experience hundreds of bone fractures for no apparent reason.  An OI diagnosis would seem daunting at the very least now try to imagine living life in such a delicate state.   Well, no need to imagine because we met Kaustuv Dasgupta who cleared up any questions one might have on how to life a happy, productive and fulfilling life with OI. Continue reading

Transverse Myelitis Awareness Day

Exactly what does it take for California state legislators to recognize the toll that a rare disease such as Transverse Myelitis (TM) has on it’s constituents.   It takes a dedicated California resident; Sandy Rey, a woman who poured her soul into raising awareness for a condition that she herself lives with.

A TM diagnosis is life altering to say the least.  The challenges faced by those living with  TM can be compared to living life trapped on a perpetual rollercoaster where the tumultuous ups and downs never cease.  All while your family, friends and community are helplessly planted on the ground watching you scream your way through the ride.

Sandy knew that she had to do something to make a difference so she single handedly took on this seemingly impossible mission.   Continue reading

Quad Rugby & Waterskiing

On August 24th, 2008 Graeme, a 2002 UNH grad and newly wed in the beginnings of a new career, was involved in a car accident that left him a C-7 quadriplegic.  Graeme was shortly thereafter admitted to Shepherd Rehabilitation Center in Atlanta to complete the rehab process and to learn how to live with a spinal cord injury.  In addition to learning how to adapt to life using a wheelchair for mobility, the Shepherd Center introduced Graeme to adaptive sports through their Therapeutic Recreation Department.

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Artist Without Arms

“For me, a disability doesn’t mean that I can’t live my own, great life.”  Polish artist Mariusz Kędzierski does things a bit differently.  “I was just a kid who went to school and who was playing football with friends, but I was a little different,” 23-year-old Kędzierski told The Huffington Post. “I was born without arms.” Continue reading

Equine Advocate & Sculptor

One of the many incredible things about Refocused Lives is that is provides an outlet to brag about our very own personal friends in addition to the many wonderful people that we meet in our quest to bring a little sunshine into your day.  We don’t get that opportunity very often without seeming weirdly obsessive about our BFF’s so we happily introduce you to Laurie Bielik, sculptor, artist, custom jewelry designer, lover of all things equine and fierce fighter of multiple sclerosis (MS). Continue reading

A Vlogger’s Life

It was the tee-shirt that Cilicia van Heyningen was wearing that initially caught RL’s eye.   It made me wonder why such a beautiful young woman felt the need to announce to the world on a tee shirt that “Society Has A Distorted Perception of Beauty”  As I looked deeper into Cilicia’s social media accounts, I found her to be quite a character that made me both laugh and cry in the time that it took me to figure out her story.   It will take you no time at all to fall in love with Cilicia’s spirit, just as I did.  She’s one of those cool people that you just want to hang out and laugh with. Continue reading