Is anyone doing research on Adults with OBPI?

[Carolyn J]

I would also like to know if Dr. Nath et al recommends a mri/cat scan for adults,full body, to see what each body's ACTUAL and/or FUNCTIONAL condition is. I just would like my Dr. to have the latest information recommended for us adults, as well as me of course. I am like a sponge,soaking up all the information I can get!
Carolyn J

[admin]

I think this is a great idea! Maybe a group of bpi adults (even if just 5-10) could organize and approach a doctor who has interest in bpi's. Maybe the doctors who saw Kath, maybe Nath, who knows?

I just think it needs to come from those impacted. If we as adults or parents of injured children advocate for more research (perhaps even UBPN), then I believe we will begin to see more. Sometimes people just need a little encouragement and motivation to spur on further investigation.

I just talked to a doctor today who is now going to do an informal study on possible cysts in children, and simply because a parent expressed concern and interest. Imagine what a group of individuals or an organization like UBPN can do!

[njbirk]

Believe me, we have tried this approach and I continue to raise the issue with every bpi specialist with whom I come in contact. We will continue to push for this, it is critical.

Nancy Birk
UBPN President

[Carolyn J]

Nancy, please keep me/this board informed of any person/specialist that I can contact to support you/UBPN in this effort. I don't mind being a research subject from every area: physical,phychological or emotional,or any other. I want my "drama"(as my son puts it) to count for something; alot of this was un-necessary really if I had information to ask questions,ie,question my pain or insist on attention to my left limbs, but here I am rambling...sorry.
Carolyn J

[admin]

Nancy,

If you feel comfortable sharing, I would love to know more. Has UBPN approached individual doctors with specific concerns or ideas for possible research? Has UBPN came forward and directly asked if they would possibly be willing to be involved in researching something specific? Have you been personally turned down? Or has it more been approached as a general expression of the need for further research with this special population?

BY NO MEANS am I wanting to sound negative or critical, which makes expressing yourself on the boards difficult sometimes. I think UBPN is AMAZING and I am so thankful for all they have done and continue to do. I am just wondering how this issue has been approached, and since it hasn't opened up many doors lately, if there could possibly be a more effective way to approach it. It is all just so very important and call me a dreamer, but I find it hard to believe that we couldn't get more support by doctors. I know there are many considerations, but with what just happened yesterday by one person approaching one doctor, there are obviously many unopened doors.

Again, I know UBPN exists of volunteers and hardworking, caring people who can only do so much. Thank you!!!

[njbirk]

The questions do sound a bit critical, to be honest, but I know that they are not meant to sound that way. It is the problem with this type of communication.

I'd like to answer them in some depth but don't have time for the next few days as I am on vacation right now with my family, who think I am nuts that I continue to check the message boards while at the beach!

So I promise to get to this next week and explain in some detail what I have requested in the past and from whom.

Nancy

[admin]

The questions weren't meant that way in the least, which is why I tried to clarify the tone. It is the problem with this type of communication sometimes. I just need to think of how I could have worded the questions differently. I apologize and sure hope you know they were simple inquiries with only the best intention behind them. There is just so much to be learned by those who have lived with this injury over the years.

What???? You are nuts! Checking the boards while on vacation at the beach. Please enjoy your vacation and precious family time. Have a great time! We look forward to hearing from you when you get back.

[Kath]

During the last 4 years I have written to various bpi hospitals asking about long range studies. I was hoping to find medical information explaining what I had to look forward to and what I could possibly do to prevent problems with my unaffected arm. I wrote to the National Institute of Health and the National Institute of Neurological Disorders and each time I was told there has not been a long range study on this injury.
I wrote on be half of myself at first then I joined UBPN Board of Directors and I wrote as the In Touch Chairperson of UBPN. Unfortunately each time I received a referral to another agency and/or was told that at the present time there are no plans for a long range study.

I attended the Disabilities across the Lifespan conference at the National Institute of Health last July. This was a meeting that covered various disabilities not only bpi. Dr. S. Kozin from Shrine’s Hospital in Pa. gave the presentation on OBPI/ Birth Palsy. During the Q&A part of this presentation we spoke about the fact that once a person/child has been released by a bpi pediatric specialist there is no more follow up nor information for continual care and/or special care needs and medical treatment for bpi. The obpi patient does not have a follow up once reaching maturity. There is a great need for more articulation between pediatric care and adult care in order to maintain better physical care along with some preventive measures that should be taken to prevent the overuse of the unaffected limb.

I truly believe that the NIH has no idea how many people are injured as the CDC does not require this injury be reported under its own code number. Each state handles it differently. Therefore without proper statistics there will be no rush to lower our statistics.

I would love to have a long range study and would be the first to volunteer both my medical records and my person for examination to help prevent secondary injury to our younger population and to perhaps obtain better medical attention for those of us who are beyond the age of surgery intervention.

If anyone one has and ideas on this matter please feel free to e-mail me with your suggestions all thoughts on this matter would be appreciated.
My e-mail is not on this sign in it is KathM@ubpn.org

Kath