Monday, August 8, 2011

More Awareness in the Medical Community

I have had a lot on my mind this week.  Between the International Autoimmune Arthritis Movement's awareness campaign, & reading some posts in my various groups, the common trend has been how even the medical community downplays Rheumatoid Arthritis and related diseases.  From companies like Tylenol & Advil to general practitioners, the majority of people seem to believe that only "old people" get arthritis. 

There are only about 250 pediatric rheumatologists, and about 350 adult rheumies.  That said, there are simply not enough of them to properly educate their patients.  They have too many patients!  Here's an example:  My daughter's doctor is one of 5 pediatric rheumatologists in the state.  She sees the patients that are local, but also patients that have left their local rheumies for one reason or another.  How many patients does she see?  4000 kids.  About 1,500 of those kids are seriously ill, coming up for monthly or even bi-weekly infusions.  I can't imagine how many patients the doctors in the west have, where many states don't even have one pediatric rheumy.

We need to find a way to educate our primary care doctors.  Not to take the place of our beloved rheumies, but to help properly diagnose and care for these chronically ill people.  A mom in one of my groups wrote that her pediatrician truly believed that her child will "outgrow" her Dermatomyositis.  There is a 1/3 of the DM population that may only be affected once.  Given how small the population is (only 3 of one million children are affected) and the varying degrees of illness, as a very informed parent I think I would have been very upset.  He easily could have researched like I do, but he chose not to.  How many other doctors don't do their homework? 

Most RA diagnoses are of patients from 20-45.  Yet, at 36 my primary tells me that I'm too young.  I was shocked!  He also told me that RA in adults doesn't affect the same joints as children, & it's a completely different disease.  I do my homework, & I knew from years of talking to adult RA patients that he was wrong.  If my doc doesn't get it, how many others don't?  I don't want to criticize; I want to raise awareness.  Autoimmune Arthritis is often the first symptom of other, more serious diseases.  Still's Disease (systemic arthritis), Lupus, Connective Tissue Diseases, Scleroderma.  All of these diseases can kill, but how can they be diagnosed if your doctor tells you that you're too young to have arthritis?  How can we get them better training?  What steps do we need to take?  And how do we get advertisers of arthritis products to stop grouping RA on their OA products?  How do we get companies like Enbrel, Humira & Orencia to talk about the many children that are affected on their commercials?  We need to start considering these things, and come together to make change. 

1 comment:

  1. Well said Danielle!!!

    I am one of the lucky ones who not only has a good rheumy, but also a pediatrician and general practitioner who both did their homework and researched JDM.

    I wish I had some answers as to how we let these companies and doctor's know about our kids and the fact that children suffer from arthritis as well. Tylenol, for one, has an arthritis pain killer in adult strength. What about the kids??? Don't they deserve to have pain meds for them as well?

    Keep it up! Give Emily a gentle hug for me.