I was born in 1974 in Buenos Aires, Argentina to Italian immigrants. I was born with a rare genetic disorder called Ehlers-Danlos syndrome kyphoscoliosis type, but it was not diagnosed until 2015. This illness caused me to have severe scoliosis kyphosis since the age of two. I spent 40 years of my life without knowing that I have a genetic illness.
Ehlers–Danlos syndromes include a group of genetic connective tissue disorders. It’s a very complicated disease to explain. Symptoms of this disorder may include loose joints and joint pain, abnormal scar formations and stretchy type skin which are often noticed at birth or in early childhood. Significant complications of Ehlers – Danlos syndromes may include aortic dissection (a tear in the inner layer of the large blood vessel branching off the heart), joint dislocations, scoliosis, curvature of the spine, chronic pain, and early osteoarthritis. Ehlers–Danlos syndromes occur because of variations to more than 19 different genes. The specific gene affected determines the type of Ehlers–Danlos syndrome that is present. In my case, I have Ehlers–Danlos syndrome Type 6, also called kyphoscoliosis, which puts me at risk for severe hypotonia, which means weak muscle tone. Motor development issues, progressive scoliosis which started at early childhood, and scleral fragility are other symptoms the appear with this type. Fortunately I don’t have the loose skin. But my skin is very sensitive and thin and it bruises easily. I use CBD oil as part of my treatment for pain and it’s been helping me a lot. I also take anti-inflammatory medications and lots of physical therapy.
I am the youngest of eight children. We were four girls and four boys. My oldest sister died from leukemia as a toddler. I grew up with a very difficult father. I realized years later that my father was always ashamed of me because of the way I looked. Growing up I was also bullied and teased by other kids due to my very prominent rib hump. Having many surgeries and wearing orthopedic braces wasn’t easy! I got teased and bullied every almost every day, making school very difficult for me. I wore my hair long for many years to cover my rib hump.
I began wearing orthopedic braces and body casts from the age 2 to the age of 11 and then again as an adult. I had my first open back surgery at 10 years old. My spine was collapsing so fast I was having trouble breathing. The doctors explained to us that I needed emergency open back surgery because my ribs were collapsing on my lungs making it difficult to breathe. I had a curve of 89 degrees and another curve of 56 degrees. Doctors explained to us that I have a deadly type of kyphoscoliosis and without surgery I would die. I had surgery and had a rod put in to stop my spine from curving any further.
Unfortunately I had complications. A few days after being sent home from the hospital I developed a very high fever. I went to see the doctor and he discovered I had a massive infection from the surgery. I almost died from this infection which left me hospitalized for three months. Fortunately the infection finally healed but over time the rod that was put in as a child began giving me problems. By the time I was 18 the rod had somehow moved out of place and doctors think it was causing my migraine headaches. I finally had to go for another surgery to remove part of the rod. My migraine headaches finally went away. However I struggled with my severe and painful rib hump and was always fearful that I would never find anyone because of the way I looked.
In 1996 I was accepted to go to school at the Fashion Institute of Technology in New York City to study textile design. I graduated in 2000 with a grade point average of 3.8. My art teacher Susan Rietman, who I am very close to, always supported me in my work and motivated me to believe in myself. Shortly after I graduated I met someone and got married but sadly found myself in an abusive relationship. After I separated from my abusive husband I was diagnosed with endometriosis. I had five abdominal surgeries for this illness which resulted in more complications. It was a very painful illness to endure.
During this time I had a dream of God telling me that I would go through many difficulties but I wouldn’t die and He would always be with me. In late 2004 I had a surgery to correct my prominent rib hump but it was unsuccessful and caused my spine to collapse at a fast rate. I have a very rare and aggressive type of kyphoscoliosis. The doctors told me they couldn’t help and that I would end up in a wheelchair and then die. I remained bedridden and highly medicated to stay alive. By 2006 I had a side curve of 115 degrees and a concave curve of 120 degrees. I felt hopeless and very scared. No doctor would touch me because my condition was so severe and complex and I only had state insurance, which doesn’t cover a $500,000 plus surgery.
One night I had a dream of a white light-filled Being who put His hand through me and straightened my spine. Afterwards in my dream I stood up and walked away. Two weeks later my brother Rick found the doctor who saved my life. He went on a business trip and found Dr. Alexis Shelekov being featured on a plane magazine. My oldest sister Ana took me to Texas where this doctor was able to correct my collapsed spine and rib hump. I would like to mention that I feel very blessed and fortunate to have the support of my family. I am grateful to my siblings for the support they have given me over the years and I hope to one day write a book about my life in which I will elaborate on the details.
To be continued…Check back soon for Part Two!