My Journey with JRA

 My name is Shelley-Rose Cook, and I’m going to be a senior in High School in the fall. I’m 17, and very soon going on 18! 

I’m told I started exhibiting JRA symptoms when I was about 1-2 years old, and was finally given the JRA diagnosis when I was about 4-5 years old. I’m from south Florida, but due to my parents’ jobs, I have been residing in Europe basically my whole life, and going to one of the American schools overseas. However, I’m moving back home to the US in one year, because I will be starting college! I have JRA, which recently developed into Rheumatoid Arthritis, as well as Endometriosis.

In terms of the effect of the illness, I wish I had been told how my life would be affected. Although I was very young when I was diagnosed and placed on a string of meds, due to an unfortunate series of events about three years ago, I don’t really remember anything from before that. As such, I do not really remember what it was like to have RA. Ironically, during and after the series of unfortunate events, I was lucky enough to experience a two-three year “hiatus” of the RA symptoms. However, over the last seven months, my RA has come roaring back. Currently I have it in both feet, knees, hips, and both wrists. In addition, the RA has been causing a long & serious bout of tendonitis too – located in both my feet, both hands, and both knees. It’s been pretty painful! Another thing I wish I was told – all the side effects of the meds! Frequent nausea/vomiting, headaches, infections (and not just limited to the sinuses…), etc. Sometimes I get sad and/or somewhat depressed because I’m “young, supposed to be out having fun and being stupid”, and all that fun stuff. However, although the RA has affected my life significantly over the last six months (i.e. I’m not able to go out and have fun with my friends, and I have to miss a lot of school due to infections, severe flares, and hospitalizations), I have tried not to let it affect my life too much. I have a lot to look forward to in my life right now! One of the things I’ve learned about having RA is that you can't outsmart or beat your illness, but you can & will manage it well. It has taught me how to set my own limits, and how to communicate them to others. I’ve also learned to enjoy the little things in life! One of the things I’d like to share with others or newly diagnosed people with RA is that you’re not alone. There are many other people out there with the same or similar illness. It can and will be difficult to find a decent health care professional, and at the beginning it’ll be hard to navigate your way through this illness – all the medical terms, the effects of the illness on your body and your life, all the medication(s), etc. But fear not! There are plenty of resources available for you and your loved ones/those helping you.   

Side effects of the illness and medications will also be a big blow, as well as the downs of having to suddenly deal with this new & prominent issue. However, you'll eventually come to a solution, find medication(s), and a system that works for you. Your life will certainly be different than it was, but you can still manage to live your life.

Having to learn & deal with RA has come at an unfortunate and difficult time in my life - I'm 17. At this age, everyone your age is out; living their life - being young, foolish, and living their life as they want. The RA, among other personal issues, has been known to lead me down a dark path during and at various times, which is and can be really scary. Somehow I’ve managed to come out the other side a better person, which I count as a blessing! If I had to sum up one silver lining about having RA, I'd have to say it's made me mature beyond my years, for which I am grateful. Henry Ford once said, “Whether you think that you can, or that you can’t, you are usually right.” This quote has and continues to help me significantly! 

 IAAM's JA Awareness MOVEMENT....

 I was honored to have Shelley-Rose Cook as the first JA Guest Blogger on both of my blogs. Thank you for sharing your personal story. If you have any questions for Shelley-Rose, please ask the questions through me and I will send them to her. If you have a JA Personal Story you would like to share, please email your story to Dana at danalm_iaam@yahoo.com with your title, blog name and URL, your name as you would like it published on my two blogs and on IAAM's Facebook Public Pages. If you do not have a blog, that is OK, you can still share your story, simply send me your story in a Word Document with your picture attached and I will put it into my blog for you. It is that simple. ;-)


Whether you have JA, are a parent of someone with JA, or care for someone with JA, I am looking for Guest Bloggers!!!! It is JA Awareness Month, and IAAM is launching its Juvenile Arthritis Awareness Movement! We'll launch this initiative on Monday July 9th so check back! Until then, a sneak preview: JA isn't the same as having Degenerative Arthritis and YOU will have the opportunity to tell the world why! Stay tuned, it's about to get goooood ;).  Watch out because IAAM's new JA Campaign is gonna blow JA Awareness out of the water! In true IAAM style it will be a little out-of-the-box and will allow YOU to shine! 

This poster was designed by IAAM for World Autoimmune Arthritis Day 2012 (held on May 20th). This JA Awareness Movement will be the 1st of many subjects we will revisit from WAAD. And you thought World Autoimmune Arthritis Day was over...pshhh, you're not getting rid of us that easily ;)