United Brachial Plexus Network, Inc.

Hope you don't mind me butting in here as an injured adult (TBPI) with no personal experience of what you are going through, but I would definitely take the Dr. to task over his use of the word 'desease' to describe your childs injury

By using the word, he is implying that what the child is suffering from is genetic, and I personally would question the Dr very closely on why he/she insists on using that particular word. Seems to me that it is yet another way of denying the true causes of the BPI. The implication is quite worrying actually.

LIZ B

OK here's one more-

Since the OB did it, how about we call it what it is...


Obstetric Brachial Plexus Assault- OBPA

Marlyn
mom to Javier 1 ROBPA

I like that Marlyn! It's got a nice ring to it.

I would be very insulted if a doctor said I had a disease. I
know that in 65 years no one ever said that to me.
I find sometimes they will refer to my injury as a "birth defect".
I quickly and firmly correct them and don't let them away with it.

I don't like the name Erb's Palsy or brachial plexus birth palsy.
Those two names imply that this is not a BIRTH INJURY and mislead people into thinking it is a birth defect.

I think it is time to for all of us to correct those who want to cover up this injury with "nice - misleading names".

Kath (adult/obpi)

This is very wrong!!
What is this Dr's Name and address??? Looks like he is in some major need of "awareness"

BTW I Love OBPA!!! Way to go Marlyn

Jeni
Kd's mommy

No one has ever called my handicap a disease.

When I've explained it to people, I 've called it a birth injury. Sometimes the person I was speaking with replied using the term "birth defect." I've always corrected this, making sure that the person knows this is an injury that happened while I was being born. I've compared it to a football injury or a war injury -- an injury that happened DURING the football game or DURING the war -- except that my injury happened during birth.

Joanie

I have never heard Nicole's BPI be referred to as a disease, nor do I think it is appropriate. I searched some definitions and the meaning really varies. While some definitions of disease would include BPIs, others definitely would NOT include BPIs. Here are a couple examples:

http://www.med.uwo.ca/ecosystemhealth/e ... sary.htm#D
Disease:
Disease can be defined in three ways:
1. An interruption, cessation, or disorder of body functions, systems, or organs.
Synonym: illness, morbus, sickness.
2. A morbid entity characterized usually by at least two of these criteria: recognized etiologic agent(s), identifiable group of signs and symptoms, or consistent anatomical alterations.
See also: syndrome.
3. Literally, dis-ease, the opposite of ease, when something is wrong with a bodily function (Dirckx, 1997).



http://www.canadapharma.org/Patient_Pat ... ary_Terms/
Disease: Any abnormality of bodily structure or function, other than those arising directly from injury.


There's also some interesting info. here:
http://en.wikipedia.org/wiki/Disease

Since the dr. made it a point of "correcting" you, I would ask the dr. to tell you specifically why he classifies a BPI as a disease rather than as an injury. Of course, even if he does consider it to be a disease, it's still wrong to correct someone for referring to it as an injury. While it may or may not be a disease, depending on which definition you use, it certainly is an injury. You should have further discussion with the dr. If you do, please let us know his reasoning. I'm curious.

~Tina, bpmom@comcast.net

I feel calling him on the disease thing is right on Tina.
Give us his email address and we can all email him to help teach him what BPI is. I wouldnt even call him a doctor. OOOOOOOOOOOOOO I am mad!!!!!!

Sorry Tina..I don't want to go back to him long enough for another discussion. I feel badly naming him so perhaps you can search back through my recent posts and you will see where the eval was. I was very disappointed in the this man's behavior, not only to us, our child but the clinical director of the program. Ego trip is all I can thinkg..and after seeing the kids from his clinic I don't see why he would have such an ego.

I am more than a bit concerned for you.... No doctor of any worth would describe the BPI as a disease. I suspect that you feel so overwhelmed by your child's injury that you are not really hearing and understanding what is being said to you. I went through that same difficulty in grasping doctor, PT and OT advise, so I found a friend to attend medical appointments with me.

Your email friend.....