Monday, July 25, 2011

It’s just Arthritis…

Sometimes I don’t think people realize how SERIOUS arthritis and juvenile arthritis (JA) really are.  Because everything looks okay, people assume it is.  Plus, people aren’t as knowledgeable about arthritis as they are about other diseases like cancer or diabetes.  Let me educate you…

This is not the same arthritis your grandparents get due to old age.  When most people hear the term Arthritis they think Osteoarthritis which is a joint disorder that involves inflammation of one or more joints and is most commonly caused by trauma to the joint, infection of the joint or age.  I actually have Osteoarthritis; I broke my wrist in the fifth grade and is aches from time to time, especially when the weather changes.  This is not the Arthritis my TWO year old daughter has.

My daughter has Rheumatoid Arthritis which is a chronic, inflammatory disorder that may affect many tissues and organs (YES ORGANS!), but principally attacks joints.  The pathology of the disease process often leads to the destruction of the joints. Rheumatoid arthritis can also produce diffuse inflammation in the lungs.  The cause of rheumatoid arthritis is unknown and is considered an autoimmune disease.  There are so many different forms of arthritis that I can’t even begin to name them all, each one having its own “special” effect on the body.

Do you know that one of the most commonly used drugs to treat JA is Methotrexate (MTX)?  Did you know that MTX is a Chemo drug?  Yes, that’s right, Chemo…of course the dose that is used to treat JA is not as high a dose as used in Chemo, but you still risk all the same side effects:
·         Chills & Fever
·         Hair Loss
·         Infertility
·         Loss of appetite
·         Lowered resistance to infection
·         Sensitivity to sunlight
·         Nausea/vomiting

Before my daughter was even two years old she was prescribed this drug…when we first discussed it with her doctor, he of course told us all the side effects…at 2 infertility isn’t a concern, but what about what she’s 25?  As a parent of a child with a chronic disease you have to weigh fixing the problem now and worrying about what may or may not happen in 20 years.  What if my daughter can’t have a son or daughter of her own one day because of this drug?  But if we take her off the drug, what will the JA do to her body?

Do you know that people who take MTX and other drugs like it are at a higher risk for cancer later in life?  When Bevin was first diagnosed I kept hearing “at least it’s not cancer” and “it could be worse”…you’re right, at least it’s not cancer…but because of the drugs she’s on, one day it might be.  Once again I have to weigh helping her now and risk what could happen.  Parents who have never been in this situation cannot imagine how hard something like whether or not to give your child a drug to help them now really is.

Some of the other commonly used drugs to treat JA are:
·         Enbrel
·         Humira
·         Remicade

These drugs also carry a great risk of possible side effects and the Remicade is given in an infusion form…like a Chemo treatment.  I don’t know as much about these drugs as Bevin’s not currently taking any, but one day she may have to…and I have met other children who are on these very powerful drugs.

With all this “talk” about HealthCare Reform and the requirement for all Americans to have Health Insurance in 2014 (I work for a health insurance broker)…do you know that arthritis is an automatic decline on most individual insurance plans?  And if it’s not considered an automatic decline, it’s a huge rate up.

These are just a few of the individual underwriting guidelines…

Of course if she has group (employer sponsored) health insurance Bevin will be okay, but what if Rich and/or I lose our jobs?  And our COBRA coverage expires?  What if we can’t afford COBRA?  What if she doesn’t “grow out” of the JA and she loses her job as an adult?  These are things I have to worry about. 

Do you know that kids with JA are also at risk for uveitis which is inflammation of the eye and if undetected or untreated a person could lose their eye sight.  Uveitis is estimated to be responsible for apx 10% of blindness in the United States, but it is something that is very common in kids with JA.  One of the treatments for Uveitis is Steroid drops…
Do you know that children with JA have their joints replaced just like adults?  This may not be as common as adult joint replacements (because ideally the child needs to have stopped growing), but if the JA is bad enough and other options are exhausted…this does happen…at the JA Conference we went to we met a young teenage girl who’d had both her hips replaced.  Now if that doesn’t sound serious I don’t know what does.

Did you know because of the immune suppressing drugs JA patients are on, things as simple as vaccines can become an issue…and being around kids who’ve recently had vaccines can also be a problem.  Ultimately when your child is given a vaccine they are given a “Live Vaccine” which is basically the virus…because JA patients are on drugs that suppress their immune systems, if they are given Live Vaccines/Viruses their body may not be able to fight it off…things like the Chicken Pox.

Did you know 1 out of every 5 kids is diagnosed with a form of JA and that currently 300,000 kids in America have it…my daughter is one of those kids and she is only 2 years old…and everything I have just told you are things I have to think about every day…no it’s not cancer, but it doesn’t mean it’s any less serious.

For more information on Autoimmune Arthritis, you can visit:


  1. What a beautiful blog! It was so nice meeting you guys at the conference & hope to see you at many more! I hope Bevin is doing well. Ayden still keeps asking about Hayden & when can they play again. :) Hugs to you all & look forward to when we can hang out again.
    Take care,

  2. Thank you for this post, I really had no idea. When I had a miscarriage, they gave me methotrexate to deal with it. I didn't realize the drugs she had to take were so strong.

    Thanks for educating us so we know better how to support you guys.

  3. Hang in there. My daughter has only had JRA for 2 months, she's 17 months old. I had never even heard of kids getting arthritis until it happened to us. Now I'm dealing with all of the same issues you brought up in this post. It's challenging, to say the least, but it's good to know we're not alone.

  4. Nicole that was a great explaination. Thank you for that as I was not completly informed on it all. I am so sad to see my family going through this, especially Bevin who is so little, I think daily about the what if's of life and things that could seriously impact my children's lives and future. When I think about it too deeply it's hard for me to breathe, so I absolutely can't even imagine what you and Rich are going through. The one thing you have always been since we were kids is strong and as hard as this is you have shown your strength through it all, with that being said, it is okay to not always be strong so don't ever feel like you always have to be the strong one. You are doing a great job and Bevin is going to be so greatful when she grows up and finds out all that you did for her. I love you. I am here for you.

  5. There are times that I read blogs that I am just so proud of how well written they are, how factual & informative. This is one of them! Awesome blog! I suspected as much about the insurance, but I've never seen it in writing. Wow. That's all I can say. Good to know for future reference. On one of my boards, there are several people that don't have insurance because of this. Thanks so much for sharing!

  6. Wow- What a great blog! I understand about the disease all too well. I was diagnosed with JRA myself at 3 years old and I have two children, BOTH with Systemic JRA! You did an amazing job explaining just a few things we battle everyday in the disease. Thank you for educating others! And I LOVE your badge...Supporting your daughter's Battle until she wins!! Best wishes to you!

  7. Great blog daughter has psoriatic arthritis and is almost 14. She was dx when she was 12. I can't imagine going through all of this with a two year old. Bravo to you and your family for taking a stand with this chronic illness and playing such an important part in educating others on the truth about it!! Thank you!!

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