Juvenile Rheumatoid Arthritis is a long-term (chronic) disease resulting in joint pain and swelling that affects children.
|Joint pain||Joint pain|
|Swollen Joints||Joints may be warm or swollen and sometimes red|
|Swollen Lymph Nodes||Swollen Lymph Nodes|
|Uveitis||Uveitis symptoms include red eyes, eye pain, increased pain when looking at light (photophobia), and vision changes.|
What was your worst experience with joint pain?
hey i looked up kineret what jt is getting for mws and it had alot of success stories from jra patients, you may want to ask dr, dly injectoin though, it may be worth it.
Hey girl, I am glad you found your way to this site. I sure hope you get out of it what I have. Hopewfully someone will connect with you and give you the advice you want and need. I am starting to feel the anxiety and fears you have had for so long. It is a battle for me and jerrod and the kineret injections. If there is anyone that you can talk to and compare stories you will truly start to see the same situations that you and Reed are going thru. Lots of luck in finding what you need to make this more tolerable for both of you. Love you all!!! TARA
I have a son with jra he is 12 now has had since he was 4 now on new medicine injections humiria. Was on enbrel injections got to where didn't help and mri showed very active arthritis in ankles so they switched him to humiria. This drug burns him once given he says the inside of him having hard time giving him this medicine. He is also on methotrexlate pills. He is having very hard time with ankles hurting and heels. He went to football practice tonight and he said ankles and heels hurt so bad i just want to sit. Does anyone have any advice or info to give me to help him so my son doesn't hurt after one day of practice with the sport he loves. Thanks Marsha
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.FIND YOUR COMMUNITY
Our rare disease resources include e-books and podcasts
Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.