Your oldest child is two, he starts having pains he never had, his personality is changing and you are about to have another baby. Sound familiar? It could. Being a Mom, you take him to the doctor, just in case. You are told it's the terrible two's. Things aren't getting better, your child is walking funny and his personality continues to change, this time the pediatrician thinks he is feeling left out and trying to get attention away from the baby. You think maybe it's growing pains, maybe you are over-reacting but something just doesn't feel right. A chance meeting with another pediatrician changes everything; weeks of testing and a year of non-steroidal anti-inflammatory drugs (NSAIDS) later, his symptoms are gone, the rheumatologist doesn't think he has a true auto-immune disease and your life returns to normal. Seven years later, more symptoms appears, your child gradually gets worse and you still have no diagnosis.
It took Kim 10 years after the onset of symptoms to get a diagnosis for Grant - Juvenile Arthritis (JA). As for Evan, the baby that was born when Grant was 2, his symptoms began when he was 11 ½; his diagnosis took 3 months. Kim now had 2 children diagnosed with a disease that serves as an umbrella for over 100 different diseases or conditions of the joints, bones, muscles and other tissues. Last week I read Kim's book, Living with Juvenile Arthritis, and I encourage you to do the same. It's not just a book, it's an emotional journey, a how-to manual for families and friends of chronic illness and a reminder that nothing should be taken for granted.
In all honesty, I am not sure where to start, there is so much to tell. Two different children, different symptoms, different treatment, same disease, same Mom. After reading her book, I am still not sure how Kim pulled herself through, I am equally impressed with the fact that she laid her life and her heart out for all to see, it moved me to tears more than once. In addition to the heartbreaking news that her son had a 50/50 chance of survival at one point, she helped guide her son through his bucket list and endured many servings of callous, misinformed advice and opinions.
JA falls under the category of 'invisible diseases', although the children may undergo chemotherapy and steroidal treatments, they may not always look sick. Also, arthritis is typically portrayed as something the elderly get in their hands, and it can be quickly relieved by a dose of Aleve. Until I read the book, I was sorely misinformed about the disease and the pain associated with it. My knowledge was as thorough as it is on Viagra, only what I see in TV commercials. Although I have no intention of study up on impotence, I did a little homework on JA.
Think Kevin Bacon 6 degrees of separation, I bet if you looked hard enough, you know someone who has it. There is a child in your son/daughters school that has it, a cousin whose symptoms you never really noticed before, or someone sitting beside you in the bleachers. The numbers are on the rise but the awareness is not; Kim can help you with that!
It's hard to understand what they are dealing with. It's not simple, it's not "just arthritis" and it's not a popular disease. If Kim Kardashian and Dave Coulier were diseases, and I'm not sure Kim isn't, JA would be Coulier. Kim has a powerful PR machine behind her, Coulier only has an 80's sitcom. He may have something to offer but he hasn't been able to get his message to the public.
Children experience excruciating pain, endure long hospitals stays and some even die from the disease. I know you don't have time to read Kim's book before Wednesday, but I wish you did. Kim lays out the disease in simple terms, using analogies to professional football, she walks you through building your team of doctors, traveling, packing for your hospital stays, schools, insurance companies and much more. There are sidebars in her book which tell the stories of many families whose children suffer from JA, each one a unique, heartfelt retelling of the challenges the families face.
As with most diseases, once you are invested, you go all the way. The Juvenile Arthritis Association was formed by parents who wanted an association that focuses solely on the Juvenile aspect, specifically pediatric rheumatologic diseases. Cure JM was founded to support families and raise funds to find a cure, it was the idea of a couple moms and a grandparent which has now raised more than $4 million dollars. Stop CAID Now is an internationally recognized group for children with any form of autoimmune or auto-inflammatory disease founded by a Mom who was not able to get the services she needed for her children. More information can be found on their websites, or in Kim's book. Wow, I really seem like a high-pressure sales person! I'm really not, I'm just overwhelmed with the information in the book and in awe of the fact that Kim wrote it.
Karen Solomon is sharing information about the challenges families with special circumstances face in their day to day lives while maintaining a sense of humor. If you have a story you'd like to share, she'd like to help you.
Visit Karen at The Missing Niche to read more stories about special families.
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