Newby!

[DancerSinger]

Hey everyone! Newby alert! I am an adult JIA Warrior who is raising my daughter who is also a JIA Warrior. 22 months old, recently diagnosed last November at 16 months old. I was diagnosed at 18 months old (33 years ago). I am here if anyone wants to ask any questions about living with JIA and parenting a child with JIA. I've been told I have a very unique perspective as I and my daughter both have it. Hope everyone is well 🙏🏼

[Daniel-Madge]

Welcome to the community. Sorry to hear about your daughter. Have things changed much since you were first diagnosed?

We have two children both diagnosed at 18 months but now 11 and 15 with all the usual highs and lows etc.

[DancerSinger in reply to Daniel-Madge]

Hi there! Thank you. Yes things have changed ever so much. Methotrexate and biologics were not options when I was younger. It was just anti imflammatories such as naproxen and diclofenac (I had both) and Hydrotherapy. That was it really. Lots of hot baths with essential oils to try and straighten my knees every morning before school etc.

Medicine has come such a long way and I feel the future is much brighter for children with JIA now compared to what it was when I was younger.

Sorry to hear about your two children. I read a paper yesterday about the genetic makeup of JIA and the correlation between siblings etc. I have an older sibling who hasn't got it but I was diagnosed at 18 months. I'm very interested about how genetics play a part. Apparently it's rare for parent and offspring to both have it. Is it the same for siblings? I read somewhere that if the first child has JIA then the second is quite likely to as well? Not sure how true that is.

How do you cope with both of your children having JIA? What type do they have? What meds are they taking? Sorry for all the questions. It's just nice to hear other people's stories

[Daniel-Madge in reply to DancerSinger]

Hello. Thanks for the reply. It’s good to know things are getting better as time passes and medicine advances. Both girls have JIA affecting multiple joints; fingers toes, ankles, knees, jaw, hips. Thankfully at the moment not the spine. One daughter also has problems with her eyes. They both cope well and are on a range of medications. Only one on methotrexate at the moment along with biologics. The older girl self injects and is pretty independent. I think having each other helps as it makes it normal. They both understand what the other one is going through.

There are 18 sibling pairs in the UK. So it is not common. There is a genetic link with Down Syndrome in that children with DS have a higher rate of JIA then the rest of the population. Just for good measure our eldest has DS but not JIA. This makes us unique in the uk and interesting for the researchers. There are many unanswered questions But I am not aware of much reasearch. Perhaps we are too busy to find it.

We are all active within CCAA which adds a positive experience to the condition for the girls. They know they are a bit rare and enjoy giving back and helping support other kids. It’s great because they can identify as children with JIA and as siblings who also have a lot to contend with, especially if they don’t really understand what is going on for their brother or sister and why they get so much of the parental time.

All part of life’s rich tapestry.

Daniel

[DancerSinger in reply to Daniel-Madge]

Yes things are much better and diagnosis seems to be a lot quicker too.

Ah same for me and my daughter. We both have Polyarticular JIA. It's good that both your girls have each other throughout this. They sound like JIA Warriors as well!

Wow only 18. I didn't know about the link between JIA and DS. Yes I agree about the unanswered questions. I am yet to speak to or meet anyone who are in my situation where parent and offspring have the same condition. I hope I will meet others soon. The CCAA sounds great. I've not heard of that before.

Yes indeed. You just have to bat whatever is thrown at you. You all sound like a very strong family of warriors! 😊

[Daniel-Madge in reply to Daniel-Madge]

No, I’ve not heard of a parent and child. Though I do no of adult children who are developing arthritis as adults, with a parent with JIA.

You can find Ccaa at www CCAA.org.uk

[DancerSinger in reply to Daniel-Madge]

Hhhhmmmm it's very interesting....well we've not been approached by any researchers yet! Ah thank for that 😊

[Montaha]

Hello ,my daughter diagnosed with polyarticular arthritis on march it was shoked for us because neither me nor my husband families have it.when she started complaining from pain on her both knes it was January we took her to the doctors they could not manage to find out what it is till March !!!Dr give her Naproxen and methotraxate pen injuction it was so bad for her every Friday she vomiting before the injuction and at night ,but it doesnt help her so the Dr decided to junge it to bio treatment also injuction amgevita yesterday was her first one we hope everything will be fine with her.she is 12 years old.sorry to hear about your daughter .good luck for you and her💕

[Daniel-Madge in reply to Montaha]

Hello

Sorry to hear about your daughter. 3 month for a diagnosis of JIA is really quick in my experience as there is no specific test and pain can be caused by so many different conditions. It may not feel like it but I think you got a good service. It took us a lot longer and I know people who have taken the best part of a year.

The sickness with methotrexate is unpleasant. Unfortunately it is a staple drug and is often used in conjunction its the biologics but great if the doctor found an alternative that works.

My daughters are 11 and 15. Both have the same condition.

Have you heard about CCAA?. (Children’s chronic arthritis association). They run family weekends. They are A chance for parents to ask questions but more importantly for children to meet others of a similar age with the same condition and have lots of fun.

I hope things work out and your daughter gets on well with the new medication. Methotrexate is still a necessary evil for many of us!

Daniel