My daughter has uveitis – a parent’s perspective25 May 2021
Lara is four and was diagnosed with juvenile idiopathic arthritis (JIA) at two years old. At three, she was diagnosed with uveitis. Tom, Lara’s father, shares an honest account of caring for Lara and managing her conditions. He tells us of her resilience, the things she loves to do, the challenges his family face, as well as his fears and hopes for Lara’s future.
“It got frightening when we found out it will affect her eyes.”
It was fortunate that Lara was diagnosed quickly (unlike some other young people). It affected her joints, and we started the journey of getting these under control through steroid treatment.
Through having regular eye checks (as children should with JIA), Lara was diagnosed with uveitis a year later. At that point uveitis overtook her joints in terms of severity.
Gradually, her uveitis got worse and worse. At four, she had cataracts in both eyes and has had cataract surgery to remove the lens from one of her eyes; without glasses she can’t focus this eye and so everything is blurry. She will likely need future surgery on the other eye too.
Lara has also developed glaucoma and has had additional surgery called a trabeculectomy to increase the drainage in her eye. She has had general anaesthetic six times in the two years since her arthritis diagnosis and three eye operations. COVID-19 delayed two lots of surgery for Lara.
“I feel anxious about uveitis.”
When it was her joints, I worried about how it would affect growth and her mobility. But for me, it got frightening when we found out it will affect her eyes. I worry about how it will affect school, learning and her career.
Looking into her future I wonder, will she drive a car? Will she have independence? Will she go permanently blind in one eye or both? Although her joints can get painful, you can’t have joint replacement surgery for your eyes.
I know all parents will worry about kids crossing the road, but even short distances can be tricky for Lara. There are worries about permanent double vision. It’s a complex condition and we as parents are having to become experts about eyes.
“From a parent’s point of view, it feels as if you have two brains.”
Because of her age it’s hard to know what Lara does and doesn’t understand, and what she can and cannot see; but her resilience amazes us every day. She loves lots of activities! Singing, dancing and gymnastics are just a few.
One of the biggest challenges is the number of appointments, treatments, and medication. She has to wear an eye patch for six hours a day, she wears glasses and a daily contact lens, which can be tough for a four-year-old! She has weekly and fortnightly injections and regular blood tests, which are all painful and cause anxiety. She also has multiple eye drops every couple of hours.
From a parent’s point of view it feels as if you have two brains. You become a project manager for her arthritis as there’s lots of administration and organisation, which can be stressful. We have medical fact sheets and plans for school to follow.
We’ve got spreadsheets, calendars and appointments for her medications, as well as tick lists for what she needs to take each day.
Lara’s to-do list is bigger than my own. She’s got surgery coming up and it’s hard to concentrate on anything else. Because it’s a chronic condition there’s not any respite.
Arthritis is so unpredictable, if there is a quiet month, it lulls you into a false sense of security, and hospital appointments are always quite mixed with good and bad news.
Often with uveitis you do not feel pain in your eyes, which makes uveitis dangerous. It can build up and you can’t see just by looking at her, you need doctors to use specialist equipment.
“Uveitis is unpredictable, unknown, and quite complex.”
It’s really stressful for parents and carers. I have another younger daughter called Reeva, who Lara loves to play with. She sees the injections and her sister in pain. The impact on the siblings is hard to quantify.
As a parent we worry and feel guilty – we try to get Reeva involved and educate her. When Reeva gets older, we don’t want her to feel like she’s less cared for and that’s always in the back of our mind.
Uveitis is unpredictable, unknown, and quite complex. If you change one thing it can make one part of the eye better but another part worse. You never know when it will get better or worse.
It’s important to raise awareness about uveitis as it can be invisible. The devastating effect that arthritis can have, not just on joints but vision as well, is not recognised. With uveitis, there’s the permanency of the damage that is caused.
I also worry about the mental health aspects when Lara gets older. I know that where we are right now isn’t positive but hopefully we will see some progress soon. I would love Lara to meet other children like her with arthritis and uveitis now COVID-19 restrictions are lifting.
Tom’s advice for parents:
- Make sure eye appointments are booked in and attended as regularly as they should be.
- Getting your employer on board is so important. They need to understand that caring for a child with arthritis could require a lot of time off, flexible working and to be able to catch up on work outside of appointments. Use all of the rights you’ve got as a carer.
- Ask for help from family and friends if you need a breather. Concentrate on self-care as you can get quite stressed without even realising it.
If you or a family member under the age of 25 has arthritis, we run a Young People and Families service that provides information and support and puts on a range of events across the country.
Our service helps young people and children offers advice on how to live well with arthritis, medication and potential treatments, as well as creating a safe space to ask questions, receive information and develop support networks.
Find out more about our Young People and Families service.
We’re here whenever you need us
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