Woman's tormented life with juvenile arthritis inspires new foundation to help children

By Brett Williamson

Arthritis is usually a condition that is associated with people in the later stages of life, but juvenile arthritis affects one in 1,000 Australian children.

Adelaide Hills woman Sarah Hammond has lived with the condition all her life.
Now 22, she has created her own organisation to ensure future generations are helped.

What life is like with juvenile arthritis

Ms Hammond was diagnosed with juvenile arthritis at 18 months of age.
Her parents noticed she had regressed to "bum-shuffling" after a short period of walking.
After visiting four different specialists, it was found juvenile arthritis had caused the regression.
Ms Hammond was simply finding the best way to move around while avoiding pain.
The diagnosis explained to her parents why she had also spent hours screaming for no obvious reason.
It was the beginning of a life of hospital visits in search for answers and cures.

A life of doctors and painkillers

Adapting and pushing through pain became a big part of her life.
The mixture of pain medication to ease the pain in her joints soon began to ulcerate and destroy Ms Hammond's stomach lining.

Twice at around the age of seven she almost drowned in her own blood after uncontrollably vomiting during treatments.
By the age of nine she had seen more specialists than most would see in a lifetime.
"I'd had over 400 days of school missed and 300 doctor appointments," Ms Hammond said.
The age would also bring a new twist to her condition.
The arthritis spread to her eyes, resulting in a condition called uveitis.
"Twelve per cent of children with arthritis can go blind," Ms Hammond said.

Losing sight at 11

At 11 years of age, a cataract formed in her right eye.
"That was the first time I knew what it was like to not see out of my right eye," Ms Hammond said.
Doctors hoped an operation to remove the cataract would result in returned vision.
It did, but only temporarily.
"Every four weeks I would go in and they would inject steroids into my eye," Ms Hammond said.
She soon discovered there was no cure for the uveitis and her vision in her right eye slowly degraded.

Osteoporosis at 12

At 12, Ms Hammond was treading water in a pool when she began to feel intense pain.
The repetitive movement caused inflammation in her right hip.
The inflammation developed into joint arthritis, osteoporosis and bone spurs.
Her condition resulted in her being placed in a wheelchair for three years.
A reaction to medication resulted in her weight ballooning to 90 kilograms.
"I was losing my hair; I had horrible skin," she said.

The trials of being a teen

It was also during her teenage years that Ms Hammond was diagnosed with what is believed to be medicine-induced lupus.
She spent the majority of her teenage years isolated from peers.
"No-one wants to be friends with that girl in a wheelchair," she said.
"Going to school wasn't fun because people didn't understand why I was like that."
To help ease the immobility of her arthritis, Ms Hammond began weight training.

Fighting against employment discrimination

Photo: Sarah Hammond stood for a little while at 17 months before reverting to "bum crawling", alerting her parents to her condition.

For the past six years Ms Hammond has studied and worked as a personal trainer at a local gym.
Her attempts to get into the workforce were plagued with rejection and misunderstandings.
After facing discrimination and fear of her condition, staff at her local gym witnessed her determination during daily training sessions and decided to accept her application for a position.
It was one of the many hurdles Ms Hammond has faced and one she wished people with a disability would never have to experience.

The spread of arthritis-induced blindness

Now 22, Ms Hammond recently learned the uveitis in her right eye had spread to her left eye.
"The fact I will become totally blind is now so much closer, and I have so much more life to live," Ms Hammond said.
Ms Hammond has one dream and the recent news has made her even more determined to achieve it.
Her hope is to make sure that not one more child needs to take the journey she has.
She is about to launch Australia's first recognised organisation for juvenile arthritis — Kids Arthritis Australia — with a goal to educate doctors and parents about the condition and aid in its early detection.
"The shortest time that I have come across so far of a child being diagnosed is one year," Ms Hammond said.

Creating juvenile arthritis warriors

While many may see her challenges as too much to cope with, Ms Hammond sees them as her driving force to help others.
She now regularly visits schools to give presentations to allow other children to understand the condition.
She refers to children with the condition as KA (Kids Arthritis) warriors to empower them and allow family and friends to acknowledge their courage.
"I have been given this to then help other children who live with arthritis," Ms Hammond said.
The only person she could find with juvenile arthritis to the extent she is living with, Ms Hammond decided to become her own inspiration.
"I don't have anyone to look up to, so I am my own hero," she said.
"I have to look back at the situations I have been through and think I don't want to have to go back there, so let's push on with this situation and let's help these [other] children who live with arthritis.
"I've dedicated my life to children living with juvenile arthritis because they really need help.
"I want to be able to support more of the children in the world so that they don't have to live the life that I have lived."
Ms Hammond will officially launch Kids Arthritis Australia on May 28.

http://www.abc.net.au/news/2016-05-19/adelaide-womans-life-with-juvenile-arthritis-inspires-foundation/7429062