Sunday, February 15, 2009

Welcome to my blog!

Hi everyone! This is post 1, I am typing as I am sitting on the couch recovering from surgery. I want to welcome you to my blog. Feel free to subscribe. I think it will be worth your time - I will try to post relevant stuff to general EDS and specific type 3 things as well. I am not a doctor (but as we all know, the doctors don't always know what is best for us anyway!), but I think that is why this will be unique - I can lend an ear, give a little info on what has worked for me, and all from the view of a normal person (well, as normal as we EDSers can be!). So, a big cheer to collagen and here we go!
Today I want to discuss how important I think it is to help scientists find out more about EDS and perhaps one day find a cure(s). We all have been to the doctors countless times - before our diagnosis having them tell us there was nothing wrong or it was all in our heads - after our diagnosis being poked, prodded and sent through the system just to get a little bit of help. Wouldn't it be great if more docs were familiar with EDS? Wouldn't it be great if you could directly affect that? Well, besides being an educator yourself and helping your doctors learn about EDS, you can directly help scientists research EDS by donating your tissue (while you are alive!). The process is really simple. You make a few phone calls. Fill out a few pieces of paper. Fax 'em in. BOOM. Your tissue is under the microscope being analyzed by leading geniuses who are specifically researching EDS. :) Sounds great to me!

NRDI - the National Disease Research Interchange provides samples to docs and scientists for research. They have teamed up with EDNF (and even if you aren't a fan of EDNF, this is still helping progressive research on EDS itself) to help with influx of EDS tissues. Your tissue can be donated before death (like if you have knee surgery) or after death (and your other organs can still be used to help in regular organ donation).

According to NDRI's website:, their purpose is "To serve scientists with customized biomaterials for use in studies to understand human disease. Human cells, tissues, and organs are required to investigate how human disease progresses and to develop new drugs and therapies for treatments and cures." The best way to research a human disease is to study the actual human affected tissues. Therefore, this moves away from animal testing that won't help with EDS and studies real donations from people like you and I.

I set them to work recently at NDRI. I had gall bladder surgery last week...I thought, "well, perhaps they might need a gall bladder to look at," so I called and they contacted all the researchers working with EDS right now. After a couple of days and a lot of phone calls on their end, they came back and said unfortunately no one was working with a gall bladder and EDS right now. BUT - now I am on file, and if I ever have any upcoming surgeries, any major work done, etc., I just call and they check it out. If they want my tissue, they work directly with the surgeons and get it in a day. I do nothing other than give my consent. :) SO GREAT! And, it feels great knowing that you can make a positive impact in a real big way just by taking a little time before you have surgery to make a call.

So....having knee surgery? Your kid having heart surgery? You just want to be registered in case there is an unforeseen accident? Well - check 'em out: Thank you for helping end needless animal research and provide important tissues that may help all of us in the long run!

Until next time...I will sit and continue to recover. The fingers are too tired to type any more. Cheers!