Really appreciative for Australia’s experts in Juvenile Arthritis giving their time tonight for a special symposium on the issues surrounding this condition which too little is known about.
Our youngest, Nylah, has it.
Thread on tonight follows @JAFAforkids #jafasymposium2020

The founder of @JAFAforkids the wonderful Ruth Colagiuri giving an opening address, outlining the objectives of the organisation.
Awareness is key, and putting it front of our politicians to highlight the funding issues
(So tag your local MP )
@RobStokesMP #jafasymposium2020

Ruth introducing Dr Davinder Singh-Grewal, Paediatric Rheumatologist, who has been fantastic in his help for Nylah and countless others.
Unfortunately, he’s one of too few in the space due to that lack of health service funding to train nurses and specialists.
#jafasymposium2020

Dr Ben Whitehead from Brisbane talking about methotrexate; a drug which reduces the damage caused by an overactive immune system (trigger of JIA)
Helps to get kids active again as an anti-inflamm.
Totally different dosage to another use; chemo.
@JAFAforkids #jafasymposium

Nausea is a common side effect of methotrexate, which can be balanced by Folic Acid.
Still, the morning after for Nylah and many others taking methotrexate ain’t fun.
Can be brutal, but it has helped.
@JAFAforkids @jafasymposium2020

Vaccinations (topical!) with methotrexate:
Dr Whitehead explains only live vaccinations should be avoided.
Flu shot encouraged.
Also one myth is methotrexate brings on infertility. No evidence at all this is true.
@JAFAforkids #jafasymposium2020

Methotrexate works well, but not in everybody. (eased Nylah’s condition but she was still affected)
The way it is set up in Australia, it is used as a gateway for kids with JIA, and if it is still exists after 3 months a move to biologics is next.
@JAFAforkids #jafasymposium2020

Dr Jeff Chaitow, leading Paediatric Rheumatologist now taking about JIA and COVID-19, which is a massive worry for all of us given the reported effects on an imbalanced immune system, of which all kids with JIA have.
@JAFAforkids @jafasymposium2020

Dr Chaitow reports a study from the US was done on immuno-suppressed patients (like JIA kids are) with COVID and the initial signs are there is no huge difference between other cases.
@JAFAforkids #jafasymposium2020

That, as a parent, is a relief.
It doesn’t cure anything for Nylah, but the great unknown about both JIA and COVID, given both have big effects on the immune system, has been a huge consideration.
@JAFAforkids #jafasymposium2020

Next expert speaker is @DrJaneMunro of Melbourne’s Royal Children’s Hospital about the issues and advances in treatment of JIA.
This is how the condition is managed.
There is no definitive cure.
@JAFAforkids #jafasymposium2020

@DrJaneMunro about treatment of JIA; and the changes.
Biologics play a big part now, Nylah has just started Adalimumab (Humira) which is thankfully PBS funded ($1200 a shot otherwise!)
Gold was once used!!!!

Panel of experts now answering questions about JIA.
Trials are ongoing for two new biological drugs, given in tablet form, not needles.
For kids and parents this is happy news.
Watching your kid having needles punched in ain’t fun.
@JAFAforkids #jafasymposium2020

Panel discussion centring on when the drugs are administered to the kids.
Routine is key, plus positive attitude and language with your child about how the drugs will help.
(Nylah gets lollipops. One before the needle, one after.)
@JAFAforkids #jafasymposium2020

But the mental state of a JIA kid is as big a point as the physical side.
What must go through their heads when all this is going on must be exhausting.
So to keep normality, and positivity as a parent is massive.
@JAFAforkids #jafasymposium2020

Quick take from the panel on the breakthroughs coming in this field:
- oral biologics instead of needles
- getting the mix right of medications (for instance Nylah is on 3)
- and expansion of the medical support teams
- more personalised treatment options
@JAFAforkids

Thank you to all the experts on the panel to give in great detail what is happening in the world of Paediatric Rheumatology, and the efforts to help with JIA.
That wraps it up and sorry not sorry for infilitrating your timelines.
It’s important
#jafasymposium2020 @JAFAforkids

Hopefully good news is around the corner for all sufferers, like Nylah