My name is Leanne Butler and I live in New Brunswick, Canada. I Am The Face Of Ankylosing Spondylitis!
“Ankylosing spondylitis is rarely crippling.”
“Symptoms of ankylosing spondylitis appear most frequently in young men between the ages of 16 and 35. It is less common in women, whose symptoms are often milder and more difficult to diagnose.”
“About five percent of ankylosing spondylitis begins in childhood; boys are more likely to have it than girls.”
“About 300,000 Americans (less than one percent of the adult population) have ankylosing spondylitis.”
I am also the face of abnormal Ankylosing Spondylitis sufferers.
Less than one percent of the adult population may have Ankylosing Spondylitis but it runs rampid in my family. On my mother’s side, my great grandmother and her 2 son’s have A.S. and my mother and her brother. On my father’s side, he has A.S. and multiple other members carry the gene including both of my sisters.
I was 5 years old when I first started having problems with what came later to be known as Ankylosing Spondylitis. When I was 4 I had my tonsils out and when I was 5 I started having severe pain in my right hip. It was thought that I had septic hip from pus getting into my blood stream when I had tonsilitis and that it had settled in my hip. It was decided that they would operate on my hip to remove the pus sac. I now bare a 1 inch wide by 8 inch long keloid scar from a surgery I didn’t need to have. When I stand that hip curves and the other curves out as normal. There is no fatty tissue as a buffer when I bump into things and the muscle was stretched out still causing weakening. I cannot even hold that leg in when sitting. After finding nothing inside my hip and a long recovery I went into what was later called remission until I was 9 years old.
There is alot I do not remember about age 9-16. Maybe it is because of the medication or maybe I have blocked it out of my memory. It was a very emotional time for me. I had another arthrotomy coming from the inside of my hip and they also tried to remove pus with needle but nothing happened. I spent months in the hospital on and off, on pain killers, naproxen, steroids, antibiotics, traction, ice baths…anything they thought might help.
At age 9 I saw a wonderful Dr. from the IWK Grace Hospital in Halifax, Nova Scotia by the name of Dr. Lang. She diagnosed me with Ankylosing Spondylitis at age 9, advising my parents that I was a rare case and the youngest person she had heard of with it. I respond to ice, not heat, and spent many hours on a hoist in a butterfly tub filled with ice water. Dr’s have questioned the diagnosis, I have questioned the diagnoses, When I was a teenager with so little known of the disease. I now have no doubt in my mind that I have Ankylosing Spondylitis.
I had alot of problems in school, with teachers, understanding my condition. I was advised not to run, so I simply walked. In grade 6 my new Physical Education Teacher at my new Middle School thought that I was just fat and lazy because I didn’t bring her my letter that was in the office stating that I was unable. Being a young girl and not someone who did the opposite of what I was told I felt forced to run around the baseball field. I spent a week in the hospital immediately following. I spent most of my Grade 6 year in a wheelchair and this started the confusion with the other kids. Why one day was I walking and the next in a wheelchair? And then shortly after I could walk again? I must be faking, it is the only explanation! Middle school was when my yearly September flare up started. I was then hoisted up the stairs in a wheelchair lift that crawled up the stairs…every day… I had a flare up in grade 7 but was mostly walking that year and the years to follow. As a teenager I struggled emotionally with the diagnosis. I was always afraid to run, jump, skip, or enjoy alot of other activities my friends were enjoying.
I give full credit of my mobility to Father Grant, who healed me. Not completely, God has other plans for me, but I’m no longer wheelchair dependant and that I am greatly thankful for. I remember being in church and in a wheelchair and a man came up to me and shook my hand and told me I needed to be healed. I thought that was a peculiar thing to say and agreed. Then came the knock on my door. The same gentleman introduced Father Grant to my father. Shortly after he told me to stand up and walk across the room…I did…for the first time without assistance and without pain in years!
Typical of ASers I have also combated other complicatins including Reflex Sympathetic Dystrophy, Muscle Atrophy, Common Cold & Flu, Chest Infections, Gastrointestinal problems, bladder problems, chronic fatigue, chronic depression, and now, what could be Fibrolmyalgia.
I have tried so many remedies including NSAIDs, Steroids, Biologics, Physio, Accupuncture, Ultrasonic Therapy, and the list goes on. So what helps? A good support system and regular movement. I have no cure, no special remedy, just hope that eventually the fusing will cease and the pain will stop. Some day there will be a cure. But after 20 years of living with the disease the only thing I KNOW that works is not giving up. I take every oppertunity I can to participate in studies and be the guinea pig because I am determined to put a reason behind the pain…to stop one child from going through what I did. That would make it worth all of this.
Ankylosing Spondylitis defines my pain but I no longer let it define my life. After 23 years of firmly believing I would never find someone who could put up with the diseases I met my wonderful boyfriend! Who continues to do everything he can for me. He keeps me sane and reminds me that my life does not revolve around my pain. I love swimming and I love my job. I became a Nail Tech knowing it was a job I could still do if I ever were to be back in a wheelchair. After a year I went back to school and took the rest of Esthetics because I am in charge of my life and I am going to do what I want to do without holding back. I don’t let myself hold back on vacation. I have done Disney and survived to tell about it…and it is the most heartfelt wonderful experience you could ask for! I cherish every moment with my boyfriend and family and friends. I let myself be happy and I let myself laugh because it truly is the best medicine.
I used to live my life vicariously through my twin sister. Now, I live my life for me and because I am determined to last standing tall like my 90 year old Great Grandmother who is THE face of Ankylosing Spondylitis! Stand tall, never give up, there is always hope and thanks to social media there is always someone there for you who knows EXACTLY what you are going through!