Sue Posted June 10, 2004 Report Share Posted June 10, 2004 As most of you know my children, mostly my daughter are constantly on this site reading and learning. My daughter is mostly angry with the medical field for the lack of knowledge in this area, especially the Emergency Room. Most of us go there only when the situation is more then ourselves or families can handle, when you get there you expect for them to be able to help you not further torment you by their lack of knowledge.What Kelly wants to do is download the NDRF book on dys. She then figures if she makes twenty five copies her and her friends are going to random doctors offices and drop the book off with a letter asking the physician (s) to please read the book and to educate themselves if possible. This from the mind of a sixteen year old!!She figures there isn't much she can do but if she could get other people todo the same and commit to even a couple copies it may make a difference.Please tell me what you think. She is bound and determined and has already a few of her friends involved. she figures if they drop them off it will save envelopes and postage!!! Sue Quote Link to comment Share on other sites More sharing options...
Merrill Posted June 10, 2004 Report Share Posted June 10, 2004 Your daughter is a sweetheart, Sue. I remember downloading that book -- and I printed sections of it at work -- but I felt too guilty to print the whole thing (using company time and resources etc) ... It's really long! I'm telling you this simply because there will definitely be some cost involved in the printing and copying... (Yes, envelopes and postage would cost a fortune!) Would be great to do double sided copying...It might be worth her calling NDRF and explaining what she wants to do. Maybe they'd be willing to donate some copies of the bound book? (Wishful thinking on my part, perhaps...) Good luck to you both -- sounds like a great idea. Quote Link to comment Share on other sites More sharing options...
purplefocus Posted June 10, 2004 Report Share Posted June 10, 2004 Sue, Your daughter sounds exceptional. I agree that we need to make health care workers aware of dysautonomia. I have copied the phamplet that you sent me and I have given it out to numerous people already. I have an appt with my doctor next week and I am gonna take several copies to give to him and his nurses. Don't know if it will help but I have to try. I think she should do it. It is wonderful to have such a support system behind you. Paige Quote Link to comment Share on other sites More sharing options...
ethansmom Posted June 10, 2004 Report Share Posted June 10, 2004 I think it's a great idea! What a sweetheart Quote Link to comment Share on other sites More sharing options...
briarrose Posted June 10, 2004 Report Share Posted June 10, 2004 Great idea but I agree that it's a huge expense. It would be cheaper to buy a box of CD's and copy it on that. Most doctor's offices have computers. We have training material in our department that the doctor's read at work. However I just had a thought. I know that our ED doctors buy audio CD's of emergency medicine to stay sharp on their skills. We should contact that company and ask them to please do a special segment on dysautonomia and POTS.steph Quote Link to comment Share on other sites More sharing options...
morgan617 Posted June 10, 2004 Report Share Posted June 10, 2004 man what a great girl! at least the er's should have a copy. they are particularly stupid about this. i bet the ndrf might help a little. it's worth a try. morgan Quote Link to comment Share on other sites More sharing options...
briarrose Posted June 11, 2004 Report Share Posted June 11, 2004 I wonder if we could launch some education idea and get funding. It would have to be well put together and backed up with some credentials. I wonder which doctors might be willing to make educational material that we could distribute through out the country. Who wants to contact NDRF and see how we could get this idea supported and off the ground? Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted June 11, 2004 Report Share Posted June 11, 2004 Actually, you can probably contact Michelle from DINET first... NDRF had their own projects. Michelle has made many contacts with medical professionals over the years and as such, I believe, can be an exceptional resource.Nina Quote Link to comment Share on other sites More sharing options...
briarrose Posted June 11, 2004 Report Share Posted June 11, 2004 Thank you Nina. I didn't know if you guys were ready to take off with such a huge project or I would have suggested that too.What do you think about the whole project and what the content should be?steph Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted June 11, 2004 Report Share Posted June 11, 2004 Debbie (from DYNA) and I talked about doing something along those lines a while back. Physician outreach is something I'd really like to focus on. I'd have to get a grant to cover the costs. I don't know if NDRF has done anything along these lines. You may want to check with them...they may have something already made up. If not, maybe we can check into costs and see if we can get funding.Michelle Quote Link to comment Share on other sites More sharing options...
DLD Posted June 11, 2004 Report Share Posted June 11, 2004 Yes, Michelle and I already discussed this. One thing the DYNA kids do is copy our newsletters and take them into physicians offices. Generally, physicians are very receptive. You all could do the same. Michelle has wonderful newsletters and they are very informative without being overwhelming to read. Ours are also available for printing from our web site (resources page) and we would be glad to mail you our most recent ones for $4.00 postage and handeling. Our next edition is out in mid July.Another wonderful option is to order:The Fainting Phenomenon: Understanding Why People Faint And What Can Be Done About ItBy Blair P. Grubb, MD Mary Carole McMann, MPHISBN#087993413 $18.951-800-216-2522http://blackwellpublishing.com/This book is a wonderful resource for physicians and is highly respected by them and it is also great for dysautonomia patients. He is holding a book signing in a major Toledo bookstore in August and it is in it's second printing. I can find out the name of the bookstore for those interested - or Michelle probably knows it. I am not sure if the price has changed since I last purchased mine - so you should check first. Quote Link to comment Share on other sites More sharing options...
danelle Posted June 11, 2004 Report Share Posted June 11, 2004 This sounds wonderful! But I have to play a little ignorant. I am not familiar with the NDRF book and how I can download it or get my hands on it. Would someone please let me know how? Thanks Quote Link to comment Share on other sites More sharing options...
briarrose Posted June 11, 2004 Report Share Posted June 11, 2004 Great book!http://www.ndrf.org/Reference.htm Quote Link to comment Share on other sites More sharing options...
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