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new to site!

Posted: Mon Aug 27, 2007 11:15 pm
by Elissa :)
Hi everyone! My name is Elissa (pronounced A-lee-sa) and I literally stumbled across this site. I've always known that I had a brachial plexus, but NEVER knew or realized that there was a whole web site dedicated to it! I was recently told that I may have a curvature in my spine due to my injury. I went to a doctor and had a HORRIBLE experience. I decided, today at work, to do some light research to see if I could find a doctor to help me and stumbled across all of you!

I'm so excited and encouraged to hear that many of you have had surgeries, which gives me hope. I guess it was just a condition that I assumed would not change in my life. I'm 31. I live in Houston, TX. Does anyone know of any doctors that specialize in OBPI here? Or how I can find them?

Elissa :)

Re: new to site!

Posted: Mon Aug 27, 2007 11:23 pm
by Mica
Hi Elissa, and welcome to the board.

I'm sorry I don't have information about doctors in Texas, but the "Resources" link on this site (located in beige direclty underneath the UBPN logo) lists many OBPI specialists.

I also wanted to let you know that many board participants are gearing up to go to UBPN camp right now - so please don't be discouraged if it you don't get many responses just yet.

So glad you're here! :)

mica

Re: new to site!

Posted: Tue Aug 28, 2007 12:49 am
by Joy in FL
Hello Elissa. Glad you were able to find us. Sorry you had such a bad doctor visit. It is really difficult finding the right care. I wish you much luck in your search.

Re: new to site!

Posted: Tue Aug 28, 2007 6:35 am
by Joanie
Elissa,

Welcome to our message boards. Glad you found us. Hope you find a doctor with whom you'll be comfortable.

Joanie, 58 years, LOBPI

Re: new to site!

Posted: Tue Aug 28, 2007 8:58 am
by rachelcasa
Welcome to the message boards. I felt the same way when I found this website it is so amazing isn't it?

You have one of the best doctors there in Houston. His name is Dr. Nath. He is a Brachial Plexus Specialist and does a wonderful job.

I live in Montana and I went to him for my surgery about 5 years ago. If you would like more information please let us know. People will put you in contact with him.

Again, welcome to our group of friends.

Re: new to site!

Posted: Tue Aug 28, 2007 10:11 am
by marieke
Welcome to the site! I'm 31 as well.
Marieke (31, LOBPI)

Re: new to site!

Posted: Tue Aug 28, 2007 11:47 am
by Kath
Elissa
Welcome to the site! I am so glad you found us.
We all felt the same why when we discovered we did not have a "rare" birth injury.
It's sad but true that no one seems to give us the information we need until we do our own research.
I love the Internet for that reason.

I was so shocked when I found UBPN in 1999 and at that time there were only 3 or 4 adult/obpi.
I was shocked to see that babies were being injured at such and alarming rate then.
I am sad that it continues today.

I am leaving for camp and will be on and off the message boards during camp.

I wish you found us sooner and could have come to camp.
I did not want to go the first time because I thought it was just for kids.
This will be the third camp I am attending.
We only run camp every two years so I hope we get to see you at the next camp.

Feel free to ask questions on any of the message board.

Kath robpi/adult
Member UBPN BOD.

Re: new to site!

Posted: Tue Aug 28, 2007 11:52 pm
by Cdunn
Just joined the site. I'm 34/m in Atlanta w/ BPI from birth. glad to know you guys are out there and making a difference. :)

Re: new to site!

Posted: Wed Aug 29, 2007 9:21 am
by Carolyn J
WELCOME "Cdunn"!
I am glad you found us. I found UBPN at age 65 only after taking a computer class and conquering my fear of this "technology age"...

As Kath said, I hope you can come to the next Camp which is held every 2 years on Labor Day weekend. This is all inclusive, all generational. For me, attending Camp 2005, was a life-changing experience and very healing, emotionally. I hope you can keep in contact and make the next one.

...oh yeah,there is no such thing as a dumb question on any message board.

Carolyn J
LOBPI/69

Re: new to site!

Posted: Wed Aug 29, 2007 9:36 pm
by MaureenK
I am new to this site as well. I am 22 years old, and I have had my injury since birth. I had no idea that there were so many other people with BPI out there. I have been reading through a lot of these posts, and I have been holding back the tears the whole time. My injury has been something I have struggled with for my whole life, and it feels amazing to know I'm not alone. I read a note someone left about wishing they could supinate, another note about trying to find ways to tie their hair back. I absolutely hate trying to style my hair. It's so awkward and uncomfortable to wedge my arm up against the wall. I always wished I could play sports like everyone else, or heck, even change a light bulb. I just wanted to thank all of you for sharing your stories, frustrations, and triumphs. I wish I could come to camp, maybe next year.