Hey My Friends,

 I have a point to get across to all who have Selective IGM Deficiency and the that I want to impress upon is how I believe we need to organzie -- have our own group.

I have read many of your posts concerning your diagnosis of Selective IGM Diagnosis and what your doctor found on lab results, ect.   I feel for all of you (especially the real young patients).   I have read that there is no reseach done on Selective IGM Deficiency because there is no money in researching this disorder because there is supposedly so few of us.  

I have read that the cure could lie in the GENE MAPPING RESEARCH done in 2000.    I remember how excited I was about that GENE MAPPING Research and how it would certainly lead to many cures to many disorders.   That Gene Mapping Research led to stem cell reseach and many strides are taking place in curing other disorders because of the GENE MAPPING and Stem Cell Research.

Every since I was in my early twenties -- I have always been interested in reading about what was going on in the medical research field on any type of disorder or any type of invention in the medical field.   I remember being really excited about the invention of the CAT SCAN and the MRI.   

As I have said -- I have always been interested int he medical research field -- I can tell you that I know a lot  on a variety of disorders because I always was reading.    I took some medical terminology classes even.   I worked at mental health facility for six months and then decided that was not for me when I developed a wart on my hand.    I typed notes and H&P.       I believe I have seen enough doctors over my lifetime to know medical records and what is relevant and what is not.    I believe I would have made a really good medical research assistant for a docctor (an assistant that did not deal with patients eye to eye though ).   

The rest of my point is this:    In the last 10 years espescially - the computer has become such an important tool in the home and office.   Why not use that tool (the computer and printer/scanner) and put it into good use scaning all your medicals that you can  manage to gather.   Scan  them into a file on the computer and/or remote drive. 

But, we must organize first.   We discuss with various doctors (immunologists, researchers) to find out how they would like to have medical records presented to them?   We find out what the relevant medical information is and what is not considerred relevant.     Find out if medial doctors prefer all their lab reports to be put in chronological order  and made into a PDF?   Find out if the TEST REPORTS should all be put into chronological order then scanned to be made into a PDF?    Or would the doctor prefer each visit to be in separate mode and put into one file.   

We consult with a doctor of composing our own questionaire (you know how the doctors have u fill out those medical history questionarres sometimes) that asks for all relevant information including our blood type (btw, my blood type is A+) and an area in the questionaire that asks what were your symptoms over the years.   This area be the area that you could print SEE ATTACHED -- for you would have typed your own written report that includes a chronolgical order report of all your symptoms experienced and whatever else we find out from a doctor who would tell us how to help them do research.

 You see, my thinking is this.    We continue to discuss our health issues here -- but I would like to begin "what I like to think"  OUR own research.   I say let us make it easy for a Researcher  to have access to ALL our medical records.   Who knows,  our group with SELECTIVE IGM Diagnosis may/could churn interest in a young research graduate.      

We can write researchers and tell them we have gathered pertinet data of medical records of many with this diagnosis -- we could have a doctor include her own letter of recommendation to take a look at what we have gathered.     We could be sure to put some of the young people's faces (diagnosed with this disorder) on some of these letters to researchers to make them see that sometimes it is NOT just about money. 

I believe when you have many patients records all impressively organized and all laid out for a researcher to start looking -- well, we have already done the legwork for him/her.    And I truly believe when we send the medical records all together in one file -- a medical researcher would be more apt to take the task on because we have done the legwork..   His job now is to look it over-- then go read the GENE MAPPING Research and then start acting on  his findings.        

Don't wait for a researcher to come to you for we might have to wait to long.    I say organize and then we approach them.   Maybe I am wrong.   Maybe there is already medical records data available and no one cares?    But, we can make them care! 

Any input from any medical researcher or doctor would be much appreciated!     And of note, for the olders ones that are not computer literate -- I possibly could scan medical infomration for one or two patients for you -- you can be assured I would keep your medical information confidential.    Which brings me to the topic of medical release -- everyone would sign a hard copy medical release if any doctor would like to pull a hard copy of your records froma medical facility.     Everyone would sign a release to give any researcher in the futre the right to ask for a copy of your medical records -- if something should happen to you and you left to live somewhere else in the universe.

 So, are you with me?   Dealing with a disk with great amount of information on it -- is much better than a bunch of paper being mailed to a researcher to ponder over.

 SMT

PS:  My printer is a LEXMARK Pinnacle Pro901 Series (the only printer that sells $5.00 ink) --  I can scan about 25 pages into a PDF.    But, it is slow and not zap quick like I would like it to be.     I have been scanning my TAX RETURNS and eventually will get around to my medical records.    

 The reason I began scaning some of my home records was because I saw a commercail selling what they call "Home Scanner."   Even though my previous employer (from five years ago) had begun scanning her office documents and began doing all of  work using data from the scanned documents, it did not dawn on me that I could do the same with my printer until I saw that commercial.  

 I am not positive -- the acutal home scanners may do a quicker scan than my printer does.   All I know is that when I scan (let's say)  a 3-5inch packed file -- it probably takes me 3 hours (maybe even more if there is a jam)  to do -- because you have to make sure the scanner does not take more than one page -- and then you have to name a folder then name the file ect.   There is a lot to do when you scan -- but at the end  and after all those hours spent -- you have less paper in your house and less papers in the file cabinet.