For years now, many of our arthritis parents have felt that we needed a celebrity to speak out, to help us to champion the cause. As Christine Schwab says in her new book "Take Me Home from the Oscars: Arthritis, Television, Fashion, and Me", arthritis has such a stigma associated with it; it is taboo in Hollywood. People are so into their stereotyping of the disease that they try not to look at it... what little they see of it is with blinders on. Because it is associated with aging and the elderly and Hollywood is all about being young and perfect, no one wants to acknowledge it. This has robbed us of money that a celebrity could raise for research. A cure will never be found if no one is researching.
As a parent, dealing with the stigma is very hard. You have people that don't believe you when you say that your child has arthritis. You have people that assume that you must be doing something wrong as parents. People look at a child on steroids... and judge that child and the parents. It is a heartbreaking cycle. This is why I choose to speak out. After a year on steroids, my daughter is still so embarrassed that she doesn't want her pictures taken, she doesn't want to be on stage or in a position where people will be looking at her. For a ten year old, what she has been going through is very, very tough. She handles her life with a positive attitude, confidence in herself, and a deeper wisdom that a hard life teaches you. There is something about these sick kids...
Anyway, back to my point. Christine Schwab was asked to appear on an episode of "The Doctors" show! She spoke about Rheumatoid Arthritis and the stigma associated with it. You can watch her episode here. We are so excited by what Christine is doing! Fighting this battle for 20 years herself, she fully understands what we are going through. She is becoming quite the advocate for our children, and we are so thrilled. This truly is an exciting time to have RA or any form of arthritis. There are so many people striving to gain awareness, like Kelly the RA Warrior, & Rheumatoid Arthritis Guy. There are new drugs that are being looked at; there have been so many amazing drugs that have been approved that are making some serious differences. My favorite always has and likely always will be Enbrel. No, it doesn't work for everyone, but it was a miracle for Emily. While we continue to wait for the green light from insurance to use it for my son, we pray that it will be a miracle for Zachary as well.
They still have no idea how autoimmune arthritis happens. There seem to be different triggers for everyone. Some people have severe food allergies or sensitivities. (For those people, drastically changing diet seems to work well.) For some people, serious infections like strep seem to do it. There are environmental triggers. They believe that it's like flipping a switch; once the trigger is released, the arthritis starts.
Some people have done very well by drastically changing their diet. Most don't. Some people benefit from glucosamine. Some people swear by long-term antibiotic use. Most people find their relief instead from drugs like Enbrel, Humira, Remicade, Rituxan, Actemra, and Symponi. These drugs are incredibly expensive, but they work. For most. But this isn't enough. We need more answers. We need a CURE.
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Saturday, January 14, 2012
Arthritis is FINALLY getting some press!
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