United Brachial Plexus Network, Inc.

Even though we are all trauma injured. There are issues that relate only to obpi because of the way our bodies were so badly damaged as babies and we do not have fully formed arms. We also have different emotional issues relating to our injuries. I can only speak for OBPI because I share many of the same issues with them.
I know you can understand the emotional and medical issues faced by tbpi. While we can share support we also need to recognize that there is a difference.
And a need for Adult obpi information as such. There are no treatments for adult obpi and no specialist working or researching our needs because our injuries are long term by the age of 25.
Kath

Just want you to know that there are issues relating only to OBPI.
I am not criticizing the Awareness information but just stating my point of view.
As OBPI I think that we need to direct some information to those Adults who are birth injured.

I do want to make one thing clear; however, this is not an issue of age or the normal aging process. I happen to be in good health except for issues directly relating to obpi. When I write about the aging process and OBPI please remember the injury is long term when we reach the age of 25... Many of the younger Obpi's have more health issues then I do. I just wanted to clear up any confusion on this matter.

While we are all bpi injured the physical and emotional issues connected to both types of bpi injury are not the same. When an adult is injured you can explain and they make choices based on the information they receive. Most tbpi enjoyed good general health until they were injured. Their arms neck etc. are well formed and adult by time they are injured.

I don't think anyone should feel bad if I address the needs of OBPI in particular because I know first hand the needs of obpi that search the net for information. It should not be presumed that the age of the Adult OBPI changes the issues we face as birth injured people. I am not a parent nor am I tbpi so my experiences with bpi are different. OBPI injuries are the direct result of someone else's mistake and when a baby is injured our arms, neck, hands, fingers, muscles, veins etc., never fully mature. OBPI issues are different in many ways.

OBPI needs for medical intervention is different. PT needs are different. Most medical professionals do not want to deal with this old injury and they would prefer to ignore it. Most medical professionals have little to no information on how to treat and adult with obpi or the fact that our arms are not mapped out the same as a normal arm would be. Needles in the wrong place can blow a vein that nourishes a muscle and cause more atrophy...etc. I am not the only obpi who faces these issues. Obpi's have had to contend with a lifetime of health issues directly related to this birth injury yet not addressed by the medical community as such.

Most people never heard of OBPI and it is considered a rare birth injury. Most OBPI who post to this board have no medical records. OBPI over 30/35 did not have access to our medical records they were sealed and now when we search for them they are no longer available.

UBPN is still young and in the learning process as to the needs of the bpi community.

This board has many more Adult TBPI posting and therefore their needs must be taken into consideration.

The needs of Adult OBPI also need to be addressed and as TINA has often said
"We are the babies future".
The issues we tackle today for adult OBPI will be faced by the children eventually. Adult OBPI are a good resource especially for emotional and life experience issues. Recently many of the posts by parents concerning education etc. were answered by adult OBPI who faced the same discrimination in childhood.

FAQ would be a good idea.
Many of our questions may sometimes sound silly yet some of these silly questions posted to the board a few years ago answered unsolved issues for many OBPI...
It is important to remember that most Adult OBPI never really spoke to anyone about "Erb's Palsy" and this is a first time experience speaking to others who have the same injury and faced the same difficulties growing up. At first most OBPI are shy about posting. Obpi's spend their entire life trying not to call attention to themselves so sometimes it has been hard to speak about issues we face.
I feel that we were considered Almost disabled our entire lives yet not given the consideration that one would expect to be given to a disabled person. Even today obpi children are dropped from EI because they are not disabled enough. Adult obpi are forced to retire early because of the loss of our unaffected arms.

Kath

The above post was directed you Francine. Some how the post did not print Francine at the top. I thought I had this board down pat. ....LOL...
Kath

We have made new pics to replace the awareness stuff that should be very clear and point people to the right direction.
Let's hope they will be up soon.