Juvenile Rheumatoid Arthritis-Ethan's Story

Arthritis Foundation Utah/Idaho Chapter

Category:

Nonprofits & Activism

Tags:

• arthritis
• juvenile arthritis
• juvenile rheumatoid arthritis
• rheumatoid arthritis
• arthritis foundation

[ArthritisFndtionSLC]

Thank you so much to everyone sharing your stories and support for one another! Your stories and experiences are so inspiring to us to continue the work of raising awareness and funds for arthritis research to prevent, treat, and one day cure this debilitating disease. Again, thank you all for your courage!

[janeconlon111]

My son experienced the same illness...systemic juvenile rheumatoid arthritis..He was the same age..same swelling in cheeks..pain..lack of growth...fevers..the onset was age 5..He just turned "21"..we went through steroids..methotrexate....Enbr­el put him in a medicated remission in 9th grade...I wanted you to hear a positive outcome..He is about 5 ft 5..he had delayed growth..we never knew if he would hit 4 ft 5 !! Just wanted to give you hope..My Best Jane Conlon ( JItz45@aol.com( R.I.

[deannej21]

Just remember that the best thing you can do is stay close to the people who stand by you, like your Mom and Dad. Another thing that helped me was to become an expert! Try to find out everything you can about your condition, and what makes you feel better or worse. On the days you feel bad, tell your Mom when it got worse, what you did and what you ate. When I eat potatoes or tomatoes or hamburgers I feel lots of pain. You are such a cool kid, Ethan. I hope you keep getting better, Hon. xoxo

[deannej21]

When I was in middle school, I did everything I could to hide my JRA from people because I was embarrassed about being different. I even skipped my meds so that my tummy wouldnt feel sick or to avoid migraines. (from Methotrexate, YUCK).You and I know better than anyone that the worst part isnt the pain even though the pain makes everything a little harder. The worst part is feeling isolated from friends and family. Sometimes being sick makes other people uncomfortable.

[deannej21]

Hi Ethan! I was a little kid with JRA too and I still have it as an adult. Im 33 now and Ive learned so much. My pet hamster made me feel so much better when I was a kid too. I named him Templeton after the rat character in Charlotte's Web. I remember it being really hard when my friends didnt understand my pain. Sometimes they would say its not so bad because I dont have cancer and Im not dying. That made me mad then, but it did teach me to take care of myself and try to enjoy my life.

[alleygirl29]

blindness and the eye doctor is nice enough to do this every 3 months for free minus the 1 that my insurance covers. Thanks to him for this great deed! Please any help would mean the world to myself and my husband. How can we help him? Please help us, help him!

[alleygirl29]

time. I am so frustrated right now. My poor son has been to hell and back and all we want is some answers. He see's an ocuppational therapist because he still can not use scissors or write properly with a pencil as his hands will not let him. Still after months, he is not making any progress with this. Any insight or help would be appreciated. I am so scared and sick of seeing my little man so ill all the time. We take him to have regular check ups of his eye's as the doctor said JRA can cause

[alleygirl29]

Then I took him to his Pediatrician and mentioned what this other doctor had said so he sent him for blood work! That came back fine, then though he might have a brain tumor because Preston suffers from migraines almost every day and now he has been having issues with his knee's wrists and shoulders! He has now sent him to have an MRI of his spine! Anyone have any answers for us or advise? This poor child LOVES hockey, soccer and football and sometime has issues doing these. He is ill all the

[alleygirl29]

said he is fine. Then last summer Preston vomitted every single day and spiked fevers with it. Then one morning he woke up head to toe in a rash. It lasted 4 days before I took him to the ER and the doctor there said seeing Preston here so much and knowing his symptoms I know he has JRA! The rash lasted another 6 days and on day 10 vanished. Going back I remember these rashes on Preston throughout his life but thought he was allergic to something he ate because it would be on his cheeks and chin

[alleygirl29]

I am crying so hard right now! My 6 year old has suffered since birth and no doctor could diagnose him. He would cry every day that his tummy hurt. He would spike fevers and vomit constant. Doctors would say he has chron's colitis, celiacs, spinal difida, herschsprungs disease and so much more! The past 2 years Preston would wake almost every morning crying that his legs hurt and he couldnt move! My husband would have to carry him out of bed. His doctor just rubbed it off as growing pains and