Erb's Palsy vs. Brachial Plexus Injury

[Kath]

Lou
I think this is a great discussion.
I went to a Rheumatologist a few years ago because the doctor thought it must be arthritis... mmmm
When he was reading my information he actually began to laugh when he read Erb's Palsy...
I was so ticked off and shocked.
When I got really annoyed and asked what was so darn funny he said " I have not heard of that since I was in med school 50 years ago" it just made me laugh.
I told him it was not funny and a life long injury his response was "it is so very rare and you hide it well".
My pains were related to being obpi when all the tests were completed.
I found UBPN shortly after that happened.
I had to go to his office with an older neighbor a few years later.
He recognized me but forgot what he did and all about his rude and unprofessional behavior.
He kept asking where he knew me from...
SO
I told him and told him how rude and insensitive he was.
He apologized profusely and I gave him a copy of Outreach so he would never think it was funny again.
I let him know I do not have a birth defect it is an injury caused by a doctor who was careless and did not give good medical care to my mother.
They warned my mother I might be injured or die and she should really consent to abort.
I am always sure they made the error in judgement and competent care when it comes to why I was injured.
They knew a C-Section should have been their choice and prearranged since I was in danger but choose to take a chance.
I like people to know it's and injury and correct them all the time when it is referred to as a birth defect.
I found it hard the first time some remarked I have a global injury. I thought mine was not so bad... until someone said those words...
I guess it's because I have always managed to do the things I had to do and most of the things I wanted to do.
It is so nice to read other peoples feelings about these terms.

As Nancy said when we spoke with SSA officials we only used the words brachial plexus injury.
We hope to educate people especially those who are in position to support bpi families.
The really were open to having these terms explained and to see if these terms will be included in the blue book used for disabilities determination.
Kath

[Grandma Lou in NH]

Wow, Kathleen, you really gave it to that ignorant doc. Good for you !!! I'll bet he has never forgotten what Erb's Palsy is. You and Nancy sound like you made great progress with SSA. I can't wait to hear more about your meetigs with them. You, Nancy and the other board members deserve such a big round of applause from all of us " takers".You all have done so much and it is greatly appreciated. Pat yourself on the back for me or wait until camp and I'll do it personally. Lou

[CyndiAnn3]

I second what Grandma Lou said! Like many others, I didn't even realize there was a name for this condition (Erb's Palsy, Brachial Plexus Palsy, or whatever the heck it is!). Thanks to this wonderful website, along with caring and compassionate people like Kath and Nancy, more and more people are starting to realize that this is a LIFE LONG injury that just doesn't get "cured". As an older OBPI, I can certainly attest to the pain and frustration that is part of this preventable injury!
Thanks for setting that Doc straight, Kath!
Cyndi
50 ROBPI