NRAS Ambassador Specialising in JIA

[DancerSinger]

Hey everyone! I hope everyone is well. I just wanted to let you all know that I have just recently been appointed the role of NRAS Ambassador and I will be focusing on the JIA side of things considering both myself and my daughter have it. If anyone has anything they would like to share with me for example, your child's JIA journey, any support you would like to see that you don't already receive, any problems you had with the diagnosis etc then please let me know. Here to help! I also have a Twitter account which is @LynseyNras.

[bpeal1]

Hello!

Nice to meet you. I have RA and my 14 year daughter has JIA. This forum is very quiet compared to the NRAS forum which is a shame. Hopefully some more parents will become regular posters here.

[DancerSinger in reply to bpeal1]

Hey nice to meet you too! How are you both doing during lockdown? Are you getting the support and treatment you both need? If you ever have anything that you feel needs to be different in terms of your treatment or support etc then please share this with me! Are you aware of the JIA awareness campaign in June? x

[bpeal1 in reply to DancerSinger]

We're both doing great - thank you. Luckily we both have the same consultant and she is amazing. My daughter started MXT on the 18th March last year (not the best timing) and really didn't get on with it but even though our consultant had been seconded to the Covid wards she took time to answer queries and help us. As soon as she could see her face to face she did and we've had at least 5 appointments with her since and we have another appointment this morning. My daughter is now on Leflunomide and recently started Adalimumab.

We are also extremely lucky with support from school as her head of year has RA so completely understands and looks out for her. The school has a great pastoral support team and they have been phoning her from time to time whilst she has been at home learning to see how she is getting on.

I appreciate that we are very lucky!

[DancerSinger in reply to bpeal1]

Hey, sorry for the late reply!

That's amazing that you have a great consultant! And the fact that her head of year has something similar with RA then all the better!

Still here for support if you need it

Lynsey

[DancerSinger]

Hello there. I am sorry to hear about your grand daughter's diagnosis. It is a big shock, especially when you don't really know that JIA exists.

Firstly I want to say, please tell them that the appointments will calm down. Initially, all of these appointments are to talk about meds and to put the best plan possible in place for your grand daughter. The steroids are a pain I know but she will not be on these forever - specialists prescribe these to start with to control the flare and she will be weaned off of these. These are also to control the arthritis while the methotrexate is being prescribed and while this gets into her system.

The methotrexate epipens are very simple to use. It might be worth them coming up with a rewards system for her? My daughter puts a pom pom in a jar every time she has an injection or blood test and then when it's full up she gets a gift.

The blood monitoring will be every month to start with just to make sure the medication is working and to check your grand daughters liver is okay etc. However eventually the blood tests will be every 3 months and then every 6 months when the specialist is happy with her blood levels.

Has she been offered hydrotherapy? If she has then these will be so beneficial.

There are companies that deliver medication to your house which will help her parents as they won't constantly need to put the prescription in and collect the meds etc. If they ask her specialist, they should be able to refer you. I think the one we use is called Health Net. There are also community nurses in some areas who will come out to your house to carry out the blood tests. Again, they can talk to the specialist about this.

I know this isn't great news but please rest assured that once it's under control (especially because it is a mild form) she will be okay. They are throwing everything at it now to catch it early. My 2 year old has it in most of her joints and quite badly. She is on methotrexate and a biologic drug and she is doing brilliantly!

As for school, there is information you can give to them (I can help you with this if needed) and I actually had a meeting earlier about NRAS trying to come up with some sort of training/awareness videos for schools to educate them about JIA. Once the school know more about JIA then I am sure they will work with you to set a plan that works well for your grand daughter.

I have JIA (now adult form) and my schooling didn't really get affected and that was over 20 years ago. Medications, treatment and appointments are so much more flexible and to a higher standard than they were back then.

Some positives have actually come from covid in the form of technology advancement. There are so many appointments and meetings that can be done virtually now so that will prevent your grand daughter from missing school as well.

I know it seems bad now but it's going to get better. If you think about all the medics conditions and disabilities that young people face and still succeed with them, it will be okay. I'm always here for support as well.

Lynsey

[DancerSinger]

Oh okay. Is she going to go into hospital every week for her methotrexate then? I know they usually let you go in a couple of times first to learn how to administer the injection but didn't realise they would be going in every week. To be perfectly honest, it is so easy to administer and would possibly be less stressful for your grand daughter to have it done at home. At least then she will have welcomed distraction like her favourite toys or TV shows etc.

Well I try to be! I always think that there is someone else out there a lot worse than us! And I will teach my daughter that she can be anything she wants to be but she might just have to do it a bit differently than others.

There's a slightly increased risk of passing this down genetically (which we only found out after my daughter was diagnosed) but it's only a 10% increased risk. It was just unfortunately that we were that 10%. However by the time your grand daughter is ready to start a family, who knows what research would have been found by then. They may even have a cure by then!

There is a small chance that any child can get JIA. I have it and none of my family have it. I do know a few sibling pairs that have it but it is generally quite rare.

I'm sorry to hear about your son, however having 2 masters degrees is absolutely incredible. I am sure there are things he can still achieve without holding down a job. Anything is possible. Even if he volunteered his skills somewhere. At least he would then gain a sense of worth and accomplishment.

I have every faith that your grand daughter will thrive just like you would want her to. Another part to my job is to raise awareness so that young people don't have to face the stigma. In this day and age, disabilities are becoming so much better accepted and supported which is so reassuring. By NRAS raising awareness and educating people about JIA, that then erases the stigma as its spoken about. Stigma is only created when others don't feel like they can talk which is a real shame. We hope to erase that!

You can always point your son and daughter in law in my direction if they need support. I also have a support facebook group if any of you need it facebook.com/Juvenile-Idiop...

[DancerSinger]

Being the loving nana is a very important job and I am sure they both appreciate that you are there if they need you. The same goes for you. I am here if you ever need a chat as it's good to have someone support you as well. It's lovely that you are there for them and care for them so deeply.

I am glad that I have lifted your spirits somewhat. That's what I'm here for! Thank you for setting up the direct debit to support JIA.org - that's absolutely wonderful!

As I've said before, I am here if you need support or someone to chat to and if your grand daughters school need any literature to help them support her at school just let me know.

Best wishes

Lynsey

[Hidden]

Thank you Lynsey for your support. It is great to you have you on board as an ambassador. Like Lynsey, I have JIA and my daughter has it too. If anyone needs support or chat that is what this forum is for. Look out for other information and new services hopefully coming soon on the JIA.org.uk website.

[strawberry567]

Hello Lynsey

I hope you and your daughter are both well. You have been so positive - it has really helped.

Would it be possible for you to send me information as to how children with JIA are supported at school? How do they make up missed classes? How are they integrated into their peer social group if they keep having to miss school? How did you manage when growing up with stigma and missed schooling?

This is my main concern. You have eased my mind on other matters and I have just participated in the Zoom discussion tonight where the rheumatologist on the panel was also very positive.

I really would be grateful for any help you can give me.

[Hidden]

Sufferer not parent but AOSD and happy to answer any questions that may help although I’m medication free except for painkillers but at 59 have managed the illness so far.