Wednesday, March 3, 2010

The World is Full of Morons

I keep hearing on the Yahoo HipWomen group that well-meaning friends of newly-diagnosed dysplastics, upon hearing their diagnosis, tell them things like "it's impossible for adult humans to have hip dysplasia," or "it's impossible that bilateral hip dysplasia would not be caught at birth."

These same "friends" then question the diagnosis and treatment plan, making the poor recently-diagnosed patient question everything themselves. Believe me, the diagnosis is confusing and upsetting enough without the "well-meaning" buttinski commentary.

Now, I realize that I have been living in hip-dysplasia fantasyland for about a year and a half. Based on the blogs I follow and the online Yahoo groups to which I belong, it would seem the world is amply populated with adults diagnosed with hip dysplasia. They are everywhere -- soon to take over the world!

But of course, the reality is that we are a very tiny population in a world that hears the term hip dysplasia and says, "woof."


The truly unfortunate part of this is that some of these "friends" are also professionals who are entrusted with people's health issues: Physical therapists, sports trainers, and (gulp) I am sure some physicians. It's scary how much misinformation exists.

Granted, PAOs are a fairly new invention and in 20 years there will probably be a much better way to correct this problem. Or perhaps screening methods will improve so that all cases actually WILL be caught at birth and corrected. Meanwhile, I'm here to say that we adult dysplastics exist and our dysplasia didn't come about due to poor nutrition, sitting in "W" position, or child abuse; we were born with it. The evidence is overwhelming - it runs in my family and I am a first-born female. Can you say, "the genes were stacked against me?"

We veteran hip chicks (and dudes) can only continue to educate and encourage the newly-diagnosed, steering them to expert surgeons who understand the condition and away from those who don't. I guess that is why I continue this blog, despite being at the point where people probably think I should move on and get a life!

6 comments:

SHC said...

TOUCHE!!!!!!!!!!

Can I re-post your posting on my site?!

SHC

TnT said...

SHC - Certainly. Terri

louisawb said...

Well I can add not only was dysplasia missed years ago, but only recently I knew something was wrong with my daughter last year at 4 months old and low and behold they had missed her dysplasia here in the 21st century!! And my guess is because they use a VERY primative hip click test, rather than use an ultrasound scanner to screen because its cheaper! On scan, when I eventually won my fight to get one, my four month old baby had clear dysplasia. 2nd child, 1st born daughter. Daughter of another undiagnosed/misdiagnosed hip patient!

Ps Terry the exersises you linked me to..how many did you do per day and for how long? I try but have an ever shrinking right buttock as still pain there! ..And thanks for the above, well said!

ojulius said...

Wow! I'm shocked at what you've been reading on that site. I don't belong to the group...probably glad I don't. :)

I was actually diagnosed with hip issues as a child, but the PAO procedure wasn't well known or used. The risk was too high and my parents chose to use hip braces on me instead in hopes that they would correct the issue with a non-surgical method.

Jen said...

One word: amen.

Katie said...

I agree completely with what you say. And I do hope that they screen every newborn in a much different so dysplasia can caught at birth and perhaps not go unnoticed. They are testing newborns for so many other things why not make checking for dysplasia a major priority. I mean x ray every baby at birth if that is what it will take. A little preventive work to save a lot of pain later. Makes sense to me but like you say most people associate this with "WOOF". And like you say when people start to question you about it, it makes you feel like maybe I am crazy. Maybe it is in my head. We definitely need to spread the word about adult hip dysplasia. And I think we are on the right track by forming a group where we can go and vent. Now we just need to make everyone else aware.