working together to find answers?

June 2, 2003

Do any of you know if any of the mito associations is keeping a database of any and all symptoms no matter how insignificant or silly they may seem to see what correlations develop if any? I'm just wondering if we ordinary people who want to keep our kids alive should do something like this. I was thinking everyone could send in a list of anything they think might even remotely resemble a symptom in their family and tell what diagnosis or possible diagnosis they have. We could make a database and do some word searches and comparisons to see if we come up with any new ideas.

If anyone has any clues, or experiences that would lead us to any new ideas for testing or treatments.

Maybe we could start really questioning the medical testing and treatments and not just accept everything they say just because they are "medical specialists".

I know we don't want to step on toes, or claim to be able to tell someone else what to do like we had any credentials, but geez, surely we have a tremendous amount to offer if we really get to work knowing the answers may very well come from us and not the overworked doctors who have to treat pretty much from what they already know for lack of time to do anything else and they are handling the very most dire cases.

Shenan and I are having a really hard time accepting the 6 month wait between appts when we've already been searching for 29 years and every place we come to it's weeks, mnths, and years waiting and then we come up emptyhanded.

I have a 4 drawer file cabinet and a bookcase full of medical books, papers, and research notes. I'm betting most of you have been through a similar process. Are we all desperate enough to put it together and see what we've got to see if it's anything different than the regular medical field has so far?

What does anyone think? Be blunt, it's fine with me. I might have a rotten idea here.

Scoggins

June 3, 2003

Yes i agree with that, if you think about we are the ones that really know

what are kids are doing and feeling the doctors just go on what we say at each

visit. But if i can help with anything i will s story and all she went

through deserves to try to be able to help another babys. Life is really short

for some people and some times i think that it was meet to be if really

depends on the persons situtation i know that s was very special yet ,

very

sad she helped alot of people while she was here my father never spoke to me for

several years , know he calls me and comes and sees me and we are trying to

start over. Alot of things happened while she was here that would never happend

and i really think out that alot but any way if you need any thing i can do

let me know shannon

June 3, 2003

Hi, .. Your idea is a great one. The UMDF has a patient registry, you can list family members and symptoms on that if you are a member. Also, I know of a project similar to what you are recommending in the planning stages. It is taking some time but will be a very important help in research.

Cindy

working together to find answers?

Do any of you know if any of the mito associations is keeping a database of any and all symptoms no matter how insignificant or silly they may seem to see what correlations develop if any? I'm just wondering if we ordinary people who want to keep our kids alive should do something like this. I was thinking everyone could send in a list of anything they think might even remotely resemble a symptom in their family and tell what diagnosis or possible diagnosis they have. We could make a database and do some word searches and comparisons to see if we come up with any new ideas.

If anyone has any clues, or experiences that would lead us to any new ideas for testing or treatments.

Maybe we could start really questioning the medical testing and treatments and not just accept everything they say just because they are "medical specialists".

I know we don't want to step on toes, or claim to be able to tell someone else what to do like we had any credentials, but geez, surely we have a tremendous amount to offer if we really get to work knowing the answers may very well come from us and not the overworked doctors who have to treat pretty much from what they already know for lack of time to do anything else and they are handling the very most dire cases.

Shenan and I are having a really hard time accepting the 6 month wait between appts when we've already been searching for 29 years and every place we come to it's weeks, mnths, and years waiting and then we come up emptyhanded.

I have a 4 drawer file cabinet and a bookcase full of medical books, papers, and research notes. I'm betting most of you have been through a similar process. Are we all desperate enough to put it together and see what we've got to see if it's anything different than the regular medical field has so far?

What does anyone think? Be blunt, it's fine with me. I might have a rotten idea here.

ScogginsPlease contact mito-owner with any problems or questions.

June 3, 2003

>

You can actually start a database right here on the Mito site but it

is correct that there is a patient database done by the UMDF.

Alice

June 3, 2003

Cindy,

How do we go about helping with that project? It WILL be long and hard.