Friday, January 6, 2012

How can we change things?

It's been a while since I asked this question, but this week it has weighed heavily on me.  How can we change the image of arthritis, the way that people perceive it?  I truly think that the autoimmune forms need to be called something other than arthritis.  Often, arthritis is a symptom of the disease, not the disease itself.   I find myself wondering why they decided to call the autoimmune forms arthritis?  Consider this:  If I told you that my daughter had an illness that was chronic, that caused her body to attack itself from virtually any angle, that it can (potentially) cause many different ailiments such as inflammation of the linings of the heart and lungs, can cause liver and kidney failure, can cause seizures and demylenation of the brain (in some forms), as well as render her unable to walk because it attacks her joints and muscles, would you take it more seriously than my saying "Oh, she has Juvenile Arthritis"?  Even when I say things like, "She has MCTD, like a sister to Lupus, & Dermatomyositis, which is rash & muscle inflammation so severe that it can destroy muscle tissue", people don't get it.  The serious nature of the diseases that fall under this umbrella are deemed unimportant simply because they contain the word "ARTHRITIS", which people associate more with their grandparents than my little people. 

In many ways, this is an exciting time to have arthritis, if you really have to be afflicted by it.  (Humor me; I'll get to why in a bit.)   For one thing, there are many children that are affected.  About 300,000 children.  There are more children affected by arthritis than children affected by Juvenile Diabetes, Sickle Cell Anemia & Cystic Fibrosis combined.  One would think that there would be more awareness.  Could it be because even many of the parents of these children underestimate this disease?  I think that is true for many.  There is a large percentage of kids that are "pauci" (less than five affected joints) and a good percentage of "poly" (5 or more affected joints).  Many of those kids do well with just an NSAID, or an NSAID and Methotrexate.  Some kids need a little bit more, and they have Enbrel or Humira added.  And many of them are still able to function at the same level as their peers.  They can still play soccer, dance, jump and play just like their friends.  And then there are the kids that don't seem to respond to treatment.  The doctors can't get them under good control.  These kids miss a LOT of school.  Many of them are on steroids, and have the terrible side effects that come with them.  These kids don't have the same quality of life as their friends, and they are often perpetually sick.  Most of them have daily pain.  Some of them have had daily pain for so long that they don't even notice it anymore.  It's just something that they have learned to live with.  And the adult sufferers seem to tell a similar tale.  How is that acceptable?  Why don't we have a cure yet?

When you tell someone that your child has arthritis, you get some crazy looks.  You get a ton of unnecessary advice.  People think that you just haven't tried a healthy enough diet, or that you have done something wrong.  "You don't really need all of those medicines.  Why don't you just drink a bazillion gallons of prune juice every day?  That will do it.".   Ummmm...... no.  It really won't.  Lately, the people that are getting diagnosed are getting angry.  They are so thrilled to have a name for it, only to find that no one takes "it" seriously.  They are pissed.  They feel robbed, and they're tired of being made to feel like they are just exaggerating their pain, or they are wimpy and weak.  Finally, because of the wonder of the internet, people are banding together in an effort to create change.  Not Obama's change, but they are demanding that they be taken seriously.  WE are demanding it.

My huband's grandmother is still alive.  She is almost 94.  She was diagnosed with Rheumatoid Arthritis (which we shall now refer to as either Autoimmune Arthritis or Rheumatic Arthritis Disease) when she was only 19.  Being around 1918, I imagine that she had RA for a long enough time period before she was diagnosed to likely have qualified for a Juvenile Arthritis diagnosis.  She has suffered for many years.  Suffered.  People didn't have the resources then to storm the AMA and demand change.  They weren't able to enlist 11,000 of their closest RA friends like Kelly, the RA Warrior.  They didn't have the ability to create and find massive audiences to help with creating non-profits like Kelly with her new non-profit, the Rheumatoid Patient Foundation., or like Tiffany.   When she was diagnosed, she was so happy to have a name... until she saw how people didn't take it seriously.  Tiffany recently created the International Autoimmune Arthritis Movement.  Patients are tired of feeling like they need to hide.  Why should they have to?  They are far from lazy, weak or anything else that people may call them.  They require help.  It's a disease.  Not caused by wear-and-tear, but a disease.  

We are pleased to have a new force that has recently risked her career to "come out" about her RAD.   Christine Schwab recently published her third book, "Take Me Home from the Oscars: Arthritis, Television, Fashion, and Me.  She is also "scheduled to appear on a segment of The Doctors, which airs January 13th on CBS. Check your local listings for times. Hope, JA Kids, and good information. Share the new for arthritis awareness!"  My parting point is a copy of one of her posts on Facebook.  She does have an excellent point that has me thinking that I need to re-evaluate my position, but for now I stand firm.  Christine says:  "I am posting this on both my pages because I feel it's important.
I know there is a lot of talk about changing the name of RA to RAD. I understand. I have RA and when someone says to me "oh I have arthritis too in my pinky finger" I want to scream. This is why I am working to change the stigma of arthritis. But coming from a media world I don't agree with changing the names of the
arthritic diseases. When I first started on my campaign to remove the stigma in May of last year I was all for giving arthritis a new name. Now I know that is not the way, at least for me and the media. I want to simplify arthritis. Make it a "Readers Digest" definition of what arthritis is and isn't. So because I don't post and forward this campaign doesn't mean I am not supportive. I simply have a different approach that so far is working. I support everyone and everything in arthritis. We are misunderstood and underrated. But that is changing. Our community knows all the various diseases. Most of us understand them but we now need the public to be on our side. To understand. These are my goals."  Well said, Christine.  As long as we're all fighting together, it doesn't matter if we don't all always agree.  We appreciate having more people joining the cause.


  1. This is a fantastic and well written documentation of the way Arthritis should be portrayed and the way it shouldn't be. Well done Danielle!

  2. I really enjoy your blog because my 4 year old son has polyarticular juvenile arthritis. I feel like I can relate to the pain you are going through. There were months when my son couldn't walk and would just cry in pain literally all day long. It affects his feet, toes, ankles, knees, jaw, neck and one elbow. It was heart wrenching to say the least. Our doctor told us it was not diet related and that we would see no difference from changing our diet. I was so desperate I had to try something. I don't want to be confrontational because I really do enjoy your blog, but food was the issue. We changed our diet. Not just a few healthy changes but serious changes. We implemented the GAPS diet, which is a very radical change. My son hated it and refused to eat for three days. I will never forget on the third day my previously bedridden child jumped out of bed and said Mommy I'm all better! His swelling was gone!!!! It wasn't as easy as that though. When he started eating again his immune system was so damaged that it caused him to have a flare up with over 50 different foods. It has been a long year of ups and downs trying to figure out what foods cause him problems. Now he takes .6 injection of methotrexate once a week and he is just like any other child. And we are on the path to lowering his dose further. He can run and play and even ride a bike. Things we thought would never happen a year ago. Pills, creams and herbal supplements don't work, neither does removing only a few foods. Radical elimination diet change does work. Modern medicine is very narrow minded towards natural treatments. They change will in time because there are many many people finding success through these methods. I hope and pray you will look into this, it is a difficult road which is why it doesn't work for some. You have to be willing to fail many times over while looking for what works for your child. It is so worth it and I'm so thankful for the people who encouraged me to take the first step.

  3. Monica-

    I have done research into the diets and homeopathic treatments, as well as antibiotic therapy & other treatments. I have surfed boards, gotten into groups, and done traditional research. I have discovered that many people with arthritis symptoms have severe food sensitivities, especially to gluten. While those people are consuming gluten, their symptoms get worse. Once they cut it out (or whatever their offending food/ foods is/are), they begin to go back to normal. Some people have multiple triggers, some have just one. Once those triggers are cut out, those people are "healed". For the majority of arthritis sufferers, it isn't as simple as changing these things- no matter how drastically. I wish that I could say that it worked for us, but MCTD is a disease that has arthritis as a feature, a symptom of the disease. It isn't just as simple as having an inflammatory arthritis. I will try anything that looks like it may help. Unfortunately, nothing much works as well as Remicade. We have friends who have a TON of food allergies. They are forced to have a special diet, but despite this, one of them has arthritis that is worse than almost anyone I know. I'm so thrilled that it worked for you, but unfortunately it didn't work for us.

    For the record, what I specifically had in mind for that was the gin-soaked raisins that everyone read about in some lame magazine. Because, don't ya know, it's totally legal to force-feed gin soaked raisins to my little people, right? Such well-intentioned advice, but it does nothing but point out how little people understand about these diseases.

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  5. Alternative treatments as herbal medicine and Yoga is the best treatment of osteoarthritis & arthritis. It manage the blood circulation balance the biochemistry levels of body thus we found a good healthy body .

  6. Thank you so much for taking the time to respond to my comment! I felt compelled to write our story because it's hard to see people saying that natural remedies and diet changes do not work because we see so much improvement with them. I just don't want others to be discouraged from trying because it might work for them. The GAPS diet is hard, we have tried other diets and they just don't do what the GAPS diet does.

    I'm so sorry you have to go through this, I will pray for you guys to find a solution that works for your family. Thanks for writing a great blog that helps arthritis families feel not so alone.


  7. Hmmm, Preeti removed their comment. For the record, it was word-for-word exactly the same as Clive's.

    Monica- I appreciate your input. I do follow the links that you post and read the info. I do remember your story, and how amazing it was for you. Sometimes I forget these things; I'll try not to in the future. I am so glad that it worked well for you, and I totally want to revisit the GAPS diet idea again this year. We tried this when my hubby was out of work; it's possible that we made some of those mistakes. I am all for whatever may work!!! It is so frustrating! I think that my son may benefit from a diet change. It will be harder to get him to change, but I can totally see how it may help him. I'm not as sure on Emily. Her issues are pretty severe, and there are just so many. But I'm always open to HOPE.

  8. Thank you for being so sweet, I hope I don't come off as pushy or annoying. It's so heartbreaking to see so many kids suffer when its possible that they could be helped! Diet change was hard enough for my son and he was only 3 I can't imagine doing it with kids who are old enough to know exactly what they want. Thankfully it seemed like there were always people there to encourage us along when we couldn't go anymore. If you are interested, here are a few sites that are seeing reversal of autoimmune disorders: