Guest Julia59 Posted August 2, 2004 Report Share Posted August 2, 2004 --------------------------------------------------------------------------------I wanted to let you know that I spoke with our state senator (Teresa Fedor) this past Saturday.My son spoke with her at the coffee shop he works at. She offered him tickets to the Kerry/Edwards event in Bowling Green, Ohio---just outside of South Toledo which is where Dr. Grubb's office is. I live in the South Toledo Area and so does our senator, which is why I was able to speak with her. I went there to pick up the tickets, and we spoke about different issues including Dysautonomia for about 15 minutes.She invited me to come to her open house on Tuesday the 11th. She told me to bring information on dysautonomia. Not surprizing she did not know what I was talking about regarding dysautonomia----but how many do know much about it? If the medical communities won't recognize it---how would we expect a non-medical professional to recognize it?However, she certainly DID NOT dismiss it. She told me to bring it to the table at her open house. I don't know what (if anything) will come out of this. It could just be another dead end, but I can't pass up this opportunity. I have to keep my bearings----and remember not to get to chatty---as sometimes with my ADHD I tend to sputter about with my mouth. Unfortunately, my brain thinks about too many subjects at one, and my mouth tries to keep up, and it doesn't come out right.I'll try to get some kind of attention paid to ANS dysfunction---where it will go------depends on how it is received by the listeners.I will gater up my collection of research journals, the ANS handbook, some of the discussion posts regarding the lack of knowledge in the medical community, and some other information including people's stories. Hopefully it will be enough---if not then we are truly in a sorry state aren't we?Wish me luck.Julie :0) Quote Link to comment Share on other sites More sharing options...
opus88 Posted August 2, 2004 Report Share Posted August 2, 2004 Great! I truly hope you can make some headway. But even if nothing apparent happens, just getting the word out to someone - anyone - is better than nothing. And who knows who you may have helped in the meantime without ever knowing it . . .Do let us know how it goes! Quote Link to comment Share on other sites More sharing options...
Brwneyedchica Posted August 3, 2004 Report Share Posted August 3, 2004 Kudos to you! That's great, get the word out. I think that all of these little things that we've all been doing may not seem like alot now. But it helps make you feel like your doing something. And who knows maybe we are all paving the way for people who will be diagnosed with POTS in the future so that they won't have to go through alot of what we have. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted August 3, 2004 Report Share Posted August 3, 2004 good job julie! good luck with it. it certainly can't hurt and maybe someone will listen. morgan Quote Link to comment Share on other sites More sharing options...
briarrose Posted August 3, 2004 Report Share Posted August 3, 2004 Good luck Julie I know that every little bit helps! I hope that someone on this forum used the information I listed on how to reach their own State Senators, please it will take all of us to write. Remember the squeky wheel gets the grease.Are you going on tuesday the 10th or wednesday the 11th? Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted August 3, 2004 Report Share Posted August 3, 2004 The open house with the Senator is on the 11th. I certainly did get lucky on that one. My son gave me her phone number and asked me to call her so I could pick up the tickets for the Kerry/Edwards event that she offered him. (His cell phone broke--after he dropped it) She offerd my husband and I tickets also.Then I Found out she was only about a mile up the road from me, so I was able to go right after I talked with her on the phone. When we spoke she sounded interested in learning more about dysautonomia---and why it is so dismissed in the medical profession.Yes there is research---only by a few. The problems is lack of education/funding in the medical community as a whole. Dysautonomia is an orphan disease due to the fact the the medical profession lacks interst in adding this to their list as a legitimate disorder. Obviously---------otherwise the majority of the Docs and other medcial professionals we come in contact with would know what the heck we were talking about.How many of us have had to educate our own doctors--(PCP's, neurologist's, and endocrinologist's on the workings of the ANS---and the effects of Dysautonomia on our bodies.I hope something come's of this---but i'm not holding my breath.Julie :0) Quote Link to comment Share on other sites More sharing options...
briarrose Posted August 4, 2004 Report Share Posted August 4, 2004 If I'm not mistaken President Bush took POTS off the Orphan list. Quote Link to comment Share on other sites More sharing options...
ethansmom Posted August 4, 2004 Report Share Posted August 4, 2004 Julie,That's excellent, I'm proud of you for taking the initiative to get the word out there. Keep up the good work- I know it can be taxing. Quote Link to comment Share on other sites More sharing options...
futurehope Posted August 4, 2004 Report Share Posted August 4, 2004 Briarrose, Julia, What does "orphan list" mean? What do you mean that Pres. Bush has taken dysautonomia off the orphan list? What are the repercussions of doing this? Thanks. Quote Link to comment Share on other sites More sharing options...
corina Posted August 4, 2004 Report Share Posted August 4, 2004 Hi Julie, good luck on this. It's very important to talk about dysautonomia and let EVERYBODY know. I'm trying to get some contacts in the netherlands to let people know dysautonomia exists. At this moment I almost think I'm the only one althoug I'm quite certain there are more people having this. So Julie: best of luckCorina Quote Link to comment Share on other sites More sharing options...
anecius Posted August 4, 2004 Report Share Posted August 4, 2004 In November of 2002, President Bush signed into law two important pieces of legislation: The Rare Diseases Act of 2002 and Rare Diseases Orphan Product Development Act. You may be interested in checking out the Office of Rare Diseases at: http://rarediseases.info.nih.gov/index.html -- there is plenty of information at that site, among others. Various dysautonimic disorders are on the list, and as far as I know, the President doesn't add to or remove from this list. I am sure that there are certain criteria that must be met. Quote Link to comment Share on other sites More sharing options...
Merrill Posted August 4, 2004 Report Share Posted August 4, 2004 If you want to know more about what the "orphan list" is--and what legislation was signed, check this out:http://www.rarediseases.org/washington/bush_signsI did a google search for "orphan diseases" and "President Bush"--this link was first in a long list of hits; you can replicate that search and read even more.This link comes from the National Organization of Rare Disorders ... and when I searched for "dysautonomia," I found only "familial dysautonomia" which is apparently different from what (I believe) any of the people on this forum suffer from--at least on the basis of what people write about themselves. Not to say, however, that symptoms of dysautonomia don't or can't run in families. They sure seem to--but what is defined in medicine as "familial dysautonomia" is something else entirely.On the basis of what I've now read, I wouldn't say POTS ever was on an orphan list. But I could be wrong...Take care, all. Hope today's a good day for you. Quote Link to comment Share on other sites More sharing options...
pamyla Posted August 4, 2004 Report Share Posted August 4, 2004 Thanks for the links everyone, that makes for some interesting reading. Maybe I missed this, but how does a rare disease get placed on the list? Is it by politicians? doctors? etc?Also, I saw that EDS is one of the rare diseases recognized. Quote Link to comment Share on other sites More sharing options...
briarrose Posted August 5, 2004 Report Share Posted August 5, 2004 Well I don't make things up! And as much as I hate our current president, I wouldn't finger him for something he does or doesn't do. What I said earlier was based on something I read last year, I will continue to look for the article.Here is a website that explains the Orphan Acthttp://www.fda.gov/orphan/oda.htmHow does an illness make the listhttp://www.fda.gov/cder/handbook/orphan.htmWhat I'm still wondering is who shot in the dark and came up with 800,000 patients with POTS? It's funny, but I only know of a few in the state that I live in. It's not something that many doctors I have spoken with are familiar with. I think they are speculating that there might be a possible 800,000 patients, that haven't been diagnosed. So how many have been diagnosed? Should we call Dr. Grubb and ask him how many patients there really are? Quote Link to comment Share on other sites More sharing options...
anecius Posted August 5, 2004 Report Share Posted August 5, 2004 The NORD site (a private-sector group) is different from the Office of Rare Diseases under the National Institutes of Health (the government site). You can find various forms of dysautonomia by searching the latter. As the site indicates, not all diseases are listed by commonly used names. I did find orthostatic intolerance and also postural hypotension, as well as a few others. Also, there is a separate search for genetic diseases, under which you will find familial dysautonomia. The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.The Office of Rare Diseases (ORD) was established in 1993 within the Office of the Director of the National Institutes of Health (NIH). On November 6, 2002, the President established the Office in statute (Public Law 107-280, the Rare Diseases Act of 2002). A rare disease (also called an orphan disease) is a disease or condition affecting fewer than 200,000 persons in the United States. An estimated 25 million people in the United States have a rare disease.The FDA link regarding how an "orphan" gets put on the list, refers to orphan drugs, not rare diseases. Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted August 5, 2004 Report Share Posted August 5, 2004 Thanks for all the replies everyone! Also, I read some of the links---very interesting reading.I will be gathering all the information possible to take to our senator next Tuesday, and I will include the links posted here in the replies.I'm afraid i'm a bit ignorant in the government site's of rare diseases---and all this information I found to be very helpful. I have gotten a little burned out on reading so much medical literature about Dysautonomia, so I have not been reading much of anything that requires any kind of comprehension lately. I have ADHD and reading is twice a difficult for me then the average person-----SLOW GOING----unless it is something that I really like.It's not that reading about dysautonomia doesn't grasp my interest---I just find readng the research and some of the medical literature hard to grasp---as I think even the average reading might. I will read more on thse orphan links as I make the time to do it.Take Care,Julie :0) Quote Link to comment Share on other sites More sharing options...
briarrose Posted August 13, 2004 Report Share Posted August 13, 2004 How did it go? Quote Link to comment Share on other sites More sharing options...
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