Hello, I am a mum to a daughter who was diagnosed with Juvenile Idiopathic Arthritis last year at the age of 8. It has been a very difficult year but we are in a better place now as we have finally have a diagnosis.
NRAS has been great with helping us as a family with advice and support. It would be nice if we could have an online community where we can all share our stories and help support one another. Newly diagnosed families could do with this support too as when we were newly diagnosed, we felt lost and confused but thanks to the team at NRAS we were able to overcome this.
Looking forward to meeting new families where we can help support each other.
My granddaughter was diagnosed with JIA when she was five. In her case though she does not have it in her limbs she developed uveitis - so the danger is loss of sight. However with the 6 injections a month of two immune suppressants that is being kept away. Obviously quarterly visits to the excellent hospital and great support from the school when she had a flare up help. You would not think there was anything wrong at all - her eyesight is excellent though there is some scarring and eventually she will need glasses to read smaller lettering in books. She does ice skating, is an advanced swimmer, does karate and has tennis lessons. Also busy with all sorts of activities at school. She belongs to the music club and plays the recorder. I was traumatised at first but talking to the wonderful support on the JIA website has helped me over the last years when I have needed to ask questions. I know that there are also groups (not online) to join and holidays for families. My son and his wife don’t do any of that - they rely on the excellent medical team and have a couple of friends who are experts - one in eye care and the other in medical research. My granddaughter who is 7 now, has a normal life and though aware why she is having the injections has taken it on board and is a happy beautiful girl with a lot of friends and social activities. I hope you have good friends around you but also use the customer help line. It is also worth exploring offline groups for JIA. Above all never lose hope - there is a lot of ongoing research and wonderful stories of how many children with JIA can have good lives. It is overwhelming but I hope your daughter is receiving the excellent treatment my granddaughter has. I send you love and best wishes. S x
Hi Strawberry567, thank you for your kind words and advice. My daughter is still struggling with coming to terms with her condition as it has had an impact on her mobility, which is expected. We are now getting used to the treatment plan and regular testing and hoping things will settle soon. Do you have any recommendations with offline groups for JIA, I would be very grateful to see if they can help support us as a family. I'm so glad to hear about your granddaughter, it has helped us to see that there is a light at the end of the tunnel and my daughter too can have an active life once her treatment starts to work as it should, fingers-crossed it will be soon. Thank you.
My granddaughter luckily has not got issues with her limbs and we keep a check on her eyes in between the 3 monthly appointments. Why don’t you do a search online for groups or set up one and advertise it on the JIA website/Facebook etc. very often that is how support groups come into being. I wish you and your daughter a truly happy future. Remember that the ongoing research into this illness will break new ground. Maybe your medical team know of a support group. Best wishes to you and your family x
Dear Siarella, if you are looking for local peer support groups, CCAA have local volunteer-run Facebook groups that chat online but who also arrange occasional in-person get togethers- coffee mornings, park meet-ups for example. A full list can be found on their website. They also run residential weekends twice a year for JIA families with activities for the children and educational sessions for parents. ccaa.org.uk/. Hope this is useful.
Thank you for sharing your story. I am a mum of a 6yo girl also diagnosed earlier this year. We were grateful to get the diagnosis but treatment has proved challenging and we are currently on steroids, MTX and now starting Enbrel injections too which is proving challenging. Just hoping this will kick in and get her stabilised. She has pain in the majority of her joints to varying degrees.
I would also love to build a community. I have really struggled with coming to terms with the disease and seeing my daughter in pain. Glad to connect with anyone who wants to either here/by phone/Facebook (lindsey brown).
I have started posting fb videos about our journey with enbrel which have received quite a bit of engagement and people reaching out with ideas for alternative types of support.
Hi，My 4 years old son was diagnosed with JIA last year 2023, he went to a friend's birthday party fell on his elbow. a couple days later we noticed that he couldn't straight his arm all the way, we were referred to a orthopedist by his pediatrician, at first he was put in a cast for 3 weeks, but the arm issue still didn't resolved, then they ordered MRI，eventually its Jia, we were very shocked and confused because before his fell, he was perfectly normal 4 years old, .had never complained pain..we went doctor appointments after appointments to get a second opinion was hoping the diagnose was wrong. the doctor explained that he already has inflammation in his elbow. right now he is under MTX injection once a week. along with folic acid. I just got to know that folic acid should NOT be taking on the same day as the MTX. but our doctor never mentioned about it, please let me know if anybody have any opinion. thank you.
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