JPsA -Juvenile Psoriatic Arthritis, how the rare disease affected a young child.
- Roberto Castillo
- 4 days ago
- 4 min read
Updated: 4 days ago
I was recently privileged to interview a single parent Michella who shared her journey so far with her disabled daughter. During that time dealing with her daughters' conditions and trying to find answers.
Her younger daughter who early on was already intolerant to milk and following a strict diet started missing a key milestone, talking. During this time she displayed behaviour that to the onlooker and particular within the nursery setting seemed to be misbehaviour. She was eating less and less, losing weight, sleeping less and crying all the time, throwing herself on the floor, sitting down more than walking, tantrums, banging her head on the table, even if it was painful she did it again.
There was other strange behaviour developing, like standing next to the radiator and only playing there with no particular reason why. Not long after she had a swollen right toe, and continued to display behaviour along the lines of the autism spectrum.
Her right eye became reddish pink on and off which at first Michella thought was from crying. However it continued and she rubbed the eye constantly and winced whenever took pictures with a flash, interestingly the right eye showed up white in those particular photos.
Finding answers
She was taken to different appointments, from oncology, MRI's & x-rays at the hospital, to the paediatrician and the GP to find some answers. During those appointments each conclusion was similar, her daughter was fine and that she was going through something like the terrible two stage and she would grow out of it, the mother seems too concerned and it was all in her head.
One particular appointment changed everything. Her daughter's red eye was examined more carefully and led to an immediate consultation with a specialist. The 2 hour appointment led to many outcomes, a diagnosis and a failing from the professionals for 18months to find an answer earlier.
The conclusion at that point was her daughter had Autism, Juvenile Psoriatic Arthritis (JPsA) a rare form of JIA (Juvenile Idiopathic Arthritis), and Uveitis. The arthritis was affecting multiple areas of her body including her right knee, elbow and right eye which at that moment they were unsure how much of her vision was left. It seems that her behaviour was a result of the pain all over her body, including her eye whilst the immune system was attacking it, and Michella's concern was correct all along.
Although there was some relief in having answers there was obvious pain in learning about the conditions and the fact that in all the appointments prior, there were 3 occasions where they may have saved a little girls' right eye who couldn't speak.
Medications and the result
Soon after she was on many different types of medications to try and treat the symptoms. From taking Methotrexate, to AMGEVITA injections, to Ibuprofen and regular blood tests. At that young age it was very difficult to explain to her why she needed to go through these things and at the same time having different reactions to them, for example having issues with her kidneys from using Ibuprofen.
In addition she developed Glaucoma as a result of being on steroids for 3 long years, and eventually her vision in the right eye was totally lost. So what are those conditions and how do they affect someone?
Juvenile Psoriatic Arthritis (JPsA)
This a rare subtype of the condition Juvenile Idiopathic Arthritis (JIA). This form of arthritis can lead to swelling in the joints, swelling and also stiffness. It can also affect the eyes leading to Uveitis and Glaucoma. The most common symptoms are:
Swollen joints
Stiffening of joints and pain
Dents or pits in the nails
Lack of energy
Uveitis
Uveitis, also known as iritis, is a rare condition that causes inflammation inside part of your eye, it usually only affects one eye but can affect both. The symptoms may develop within hours and days or longer over weeks and months and can include:
blurred vision
dark spots or lights in the corner of your eyes
red or watery
painful
Glaucoma
In this condition the main nerve that connects the eye to the brain becomes damaged. It can affect both eyes but may be worse in one, and many do not know that they have the symptoms it is only usually picked up in routine checks. It can lead to symptoms such as:
red eyes
painful eyes
sore around the eyes
headaches
blurred vision
seeing rainbow circles around bright lights
Michella's' message
This story was shared by Michella so that others could not only be made aware of Juvenile Psoriatic Arthritis and Uveitis, but also some of the signs that may help to get your child diagnosed quicker especially if they are not talking. She leaves us with this short message:
"To anyone reading this if you feel something is wrong then it's wrong, do not let anyone tell you that it is completely in your head. I still remember the day I was scared to go to the GP because of the way they made me feel ".
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