My name is Alyssa Pensini. I’m 17 years old and I’m in my last year of school, completing my HSC.
In January 2011, after numerous blood tests and doctors’ visits, I was diagnosed with juvenile arthritis. I was only 11 but was told I had the results of an 85 year old. I immediately began taking numerous medications every day – this has been a constant for the past 6 years.
HOW MY LIFE CHANGED
Before being diagnosed, I struggled to get out of bed every morning. My joints were stiff, the pain was unbearable and my neck was seizing. Some mornings it felt as though my chest was being crushed – I struggled to breathe.
I could no longer play the sports I once loved, like basketball, swimming and squash. I slowly began to realise that I was different to all the other kids in my year because I struggled to do the things everyone else my age was doing.
Daily activities became a struggle. My parents were carrying me down the stairs due to the pain in my ankles – they were evening buttering my toast!
I STRUGGLED AT SCHOOL
For months, I attended school with crutches and swollen and bandaged feet. A student in Year 6 should’ve been able to participate in Personal Development, Health & Physical Education (PDHPE) lessons, but this wasn’t the case for me.
It was extremely hard. Even writing became problematic. I went from being a bright, bubbly and positive young girl, to a pain-ridden, sad and isolated child. The emotional struggle was immense.
Around Year 10, my medication stopped working because my body was becoming immune and I suffered forever increasing pain. My ankles and wrists were swollen daily, and I experienced migraines 4-5 times a week.
I was forced to have nine consecutive weeks off during the last term of Year 10, and was absent for over 75 percent of Year 11. I was admitted to hospital numerous times, sometimes staying for up to a week.
MANAGING MY CONDITION TODAY
Relief came when I started to see a Paediatric Rheumatologist - one of only two in New South Wales.
I started having injections twice a week along with my other medications. This has been going on now for almost a year and a half. The change in me was dramatic. I heard that I looked like a completely different person. My new specialist was amazed at the improvement from when he first saw me.
I continue to have two injections weekly, daily medication and a blood test every 4 weeks. I attend school nearly every day and my body feels better than ever. I’ve joined a gym and look forward to completing my high school studies, then onto university!
JUVENILE ARTHRITIS PROGRAMS THAT HELPED ME
Through all this adversity, my condition has given me some priceless experiences. I’ve been fortunate enough to attend Camp Footloose, a camp for children between the ages of 8 and 18 with juvenile arthritis, for the past 2 years.
Camp enabled me to connect with others who know what it’s like to have juvenile arthritis, and I made lifelong friends. I look forward to my next camp at the end of this year.
Following these camps, I was invited to volunteer as a leader for Camp Twinkletoes, a camp for children with juvenile arthritis under the age of 8. I was delighted at the opportunity to help younger children suffering from the same illness, and share my story with their parents.
~ Alyssa Pensini (April, 2017)
How you can help Arthritis & Osteoporosis NSW to support others like Alyssa
Juvenile arthritis now affects 1 in every 800 Australian children. We need your assistance to help the many children and families affected by this disease. Donating to our tax appeal today will help us to continue providing education and support to these young people through our programs, including our two annual children’s camps: Camp Twinkletoes and Camp Footloose.