Re: Kath's OBPI mail to us all........

Tina · Post by **Tina** » Thu Oct 31, 2002 5:30 pm

Just a note to ask whoever recieved Kath's email questionnaire to please please respond to her. These issues need to be taken very seriously and it seems we are our own best advocates!!!!!

Thanking you in advance.

T.

Sharon · Post by **Sharon** » Sat Nov 02, 2002 1:05 pm

Hey Tina, I responded and think that questions should be put out for answers and feed back. (One at a time though)

By the way, have you been on good terms with the lightening gods and goddesses? LOL. Sharon

sunflowers · Post by **sunflowers** » Fri Nov 08, 2002 9:36 am

MIke and I didn't get a questionaire, he is old enough now to answer questions and is instrumental in our area in trying to get awareness out. He's eleven now and the news media still won't respond even to a child asking for help.
Kath please start including Mike in your questionaires and things I think it would be a good way for him to not fell so alone... H ewon't post here yet. But we'll see

Kathleen M · Post by **Kathleen M** » Fri Nov 08, 2002 9:55 am

Sunflowers

I e-mailed the very adult/obpi.... like over 25 for information on how and when they noticed overuse... I did not even include the younger obpi/adults like Michelle or Carrie.... I was looking for very long term information from them... and I email to those who I have had some e-mail contact with in the past. I will post the questions on the board because that is what most want... I just felt funny about so many posts... and thought some were not comfortable posting...
Kath

sunflowers · Post by **sunflowers** » Fri Nov 08, 2002 10:06 am

I appreciate your reply. I just wondered I have seen several posts in the past regarding surveys and just wanted to be included.... Mike may be young. But these surveys not only help us know what we all have in common and differences... but it lets us younger folks know what to watch for...
example
You guys talk alot about over use, limbs being cold, pain ..etc..
For me as a mom of a eleven year old... that lets me know I need to start making changes for him now to try to avoid some of this when he is older if we can prevent it or make things better for him just by watching you folks it helps us alot.

Thanks

Kathleen M · Post by **Kathleen M** » Fri Nov 08, 2002 12:36 pm

Sunflowers

That is exactly why I started to ask the questions.
Sometimes people don't want to scare parents because we have been at it so long....

Prevention is the key word... Also education....

There are NO LONG RANGE STUDIES on those of us who are injured as newborns. No study on how the injury impacts our entire body and none on the injuries sustained due to compensation... yet many report having started with back problems as young as 20 and no one making the connection of obpi and their back neck problems... so we need to begin here to do it...

Kath

alex · Post by **alex** » Fri Nov 08, 2002 7:07 pm

Hi. I've been familiar with this message board since epirg days, had surgery from finding this site, and would love to answer this email questionaire.
How do I find it? I would apprecite any info.
thanks in advance, alex

jep98056 · Post by **jep98056** » Fri Nov 08, 2002 8:50 pm

Me too.
John P.

sunflowers · Post by **sunflowers** » Sat Nov 09, 2002 10:32 am

you were saying you had back problems as young as 20....
Well I can say that at 11 we already have a functional scholeosis... I can't spell to save my life.

so it might be worth it to go to some of the younger folks... to see how early some of these problems begin.
just a thought

Kathleen M · Post by **Kathleen M** » Sat Nov 09, 2002 11:26 am

Thanks Sunflower

One of the reasons I am starting with the older/obpi is that we have not addressed our own problems because of a lack of medical information many of us just thought we had "bad backs, vision etc... We need to connect the problems of a life time first to see how much is really related to our obpi and also to be able to better support the younger community.
Believe it or not the support for the younger community is so much greater then we ever had and our parents had none - so we were silent about our injuries and had no place to compare notes until we found UBPN... Now we are beginning to examine the common threads of obpi.
Our medical knowledge was just not there... For many adult/obpi this board is the very first time some have spoken about their injury at all... I know for me I kept quiet for 60 years and until I was in e-mail contact with so many I did not realize how many common health issues we shared...

We need to address some of our own issues and start with addressing them and connecting them before we can begin to help.

That is why the question on growth spurts etc... Once we have the information on Adult population then we can begin to make the connection to the younger children...

To try to cover both at the same time would be too much. The idea here is to get information to begin to address the need for a long range study on the life time effects of being obpi... that means to study those who are older and fully grown and also maturing and aging.

This type of study would then prevent future injury for the younger generation by promoting better medical care and training.

Kath