Our 14-year JIA journey

Jo's story. Photo courtesy of Nadine Shaabana via Unsplash.

Our son was diagnosed at a time when we were just learning about being parents, and suddenly had to learn about a disease affecting our baby boy. We were overwhelmed and under-informed.

It hasn’t been an easy journey, but it has been enlightening and surprisingly rewarding at times. Sounds funny when you’re talking about a currently ‘incurable’ illness. But it’s true.

In our crash course in JIA, we’ve learned some important lessons:

  • You are first and foremost your child’s best advocate and carer. You’ll know when things need extra attention.
  • Involve yourself in every step of your child’s care—after all, no one knows them better—even if you don’t know all the medical terminology that comes with conditions like these.
  • Have open and honest discussions with the doctors—and there could be a lot of them—so find the ones you can trust and include them in any management plans.
  • This will help you build a solid healthcare team: don’t forget to include the allied health specialists (physiotherapists, occupational therapists, and all the other “ists” you’ll meet during your journey).
  • Get to know the local pharmacist or find one you like. If they’re good, they’ll dispense any medication needed to manage the disease, discuss potential drug interactions, and dispel any myths about alternative treatments that well-intentioned friends and family might suggest.
  • Inform and include the school about your child’s condition, have your input into any Individual Education Plan to best support your child’s learning.
  • Don’t forget to inform all the other organisations who look after your kids in your absence: daycare, school, sports groups and the like.
  • Keep yourself informed. But don’t overdo it. Don’t be afraid to ask questions, but don’t scare yourself with too much info that may never apply to your child. Use trusted websites, like this one.
  • Don’t sweat the small stuff, instead celebrate every minor milestones…even if they’re a little late in coming.
  • Find support: autoimmune disease affects every member of the family in some way. And don’t forget to take care of the carers!

 

14 years on, we’re still on our JIA journey, but thankfully we’ve found some pretty decent travel-mates along the way.

 

We wish you a safe trip too.

Jo Turner, October 2017