Chrissy Posted April 11, 2009 Report Share Posted April 11, 2009 Hi, I have been sick with dysautonomia for the past 4 years. From the beginning my mom and I have searched the internet and books for any and all info on this not well known subject. Still with this knowledge the past four years have been an on going fight. A fight with uneducated doctors. A fight with insurance companies. A fight for diability. A fight with uneducated family and friends. This I wish to change.I along with my mom want to be advocates in bringing to light this very real, very life changing condition. Let America know this issue is out there. Fight to have this condition on the approved disability list for SSI and Medicaid. Try to stop the mental abuse caused by uneducated doctors that are too lazy to do some research. Having psychologist and life coaches, who understand dysautonomia and how it limits patients lives, help patients and their families live as normal of a life as possible. Helping lessen the number of families that fall apart due to living with this condition. Bridge the gap in communication/understanding between patients and their families.I would appreciate any input or advice on organizations we can get involved in to help make these goals a reality. Thank you, Chrissy. Quote Link to comment Share on other sites More sharing options...
ken870 Posted April 11, 2009 Report Share Posted April 11, 2009 did you get my message about your idea about going to vanderbilt and did you go to their website and fill out their forms and if you did did they set up an appointment for you to go into the research study. Quote Link to comment Share on other sites More sharing options...
stillkickin Posted April 12, 2009 Report Share Posted April 12, 2009 The dysautonomia youth network of America (dynakids.org) is a great organization with awareness and support as their main goals. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted April 12, 2009 Report Share Posted April 12, 2009 Hi, I have been sick with dysautonomia for the past 4 years. From the beginning my mom and I have searched the internet and books for any and all info on this not well known subject. Still with this knowledge the past four years have been an on going fight. A fight with uneducated doctors. A fight with insurance companies. A fight for diability. A fight with uneducated family and friends. This I wish to change.I along with my mom want to be advocates in bringing to light this very real, very life changing condition. Let America know this issue is out there. Fight to have this condition on the approved disability list for SSI and Medicaid. Try to stop the mental abuse caused by uneducated doctors that are too lazy to do some research. Having psychologist and life coaches, who understand dysautonomia and how it limits patients lives, help patients and their families live as normal of a life as possible. Helping lessen the number of families that fall apart due to living with this condition. Bridge the gap in communication/understanding between patients and their families.I would appreciate any input or advice on organizations we can get involved in to help make these goals a reality. Thank you, Chrissy.Is it true that dysautonomia isn't on the approved list for disability list for SSI? That seems crazy. Quote Link to comment Share on other sites More sharing options...
Chrissy Posted April 12, 2009 Author Report Share Posted April 12, 2009 Hi, I have been sick with dysautonomia for the past 4 years. From the beginning my mom and I have searched the internet and books for any and all info on this not well known subject. Still with this knowledge the past four years have been an on going fight. A fight with uneducated doctors. A fight with insurance companies. A fight for diability. A fight with uneducated family and friends. This I wish to change.I along with my mom want to be advocates in bringing to light this very real, very life changing condition. Let America know this issue is out there. Fight to have this condition on the approved disability list for SSI and Medicaid. Try to stop the mental abuse caused by uneducated doctors that are too lazy to do some research. Having psychologist and life coaches, who understand dysautonomia and how it limits patients lives, help patients and their families live as normal of a life as possible. Helping lessen the number of families that fall apart due to living with this condition. Bridge the gap in communication/understanding between patients and their families.I would appreciate any input or advice on organizations we can get involved in to help make these goals a reality. Thank you, Chrissy.Is it true that dysautonomia isn't on the approved list for disability list for SSI? That seems crazy.It's true. I know its crazy. I have been fighting for ssi and medicaid for 3 years. My attorney says its cause I'm so young and that we have to prove that my symptoms as a whole create a disability. I'm told if you appeal it enough and make it to the federal level they will grant your request. They have to back pay you until you first file as long as you keep appealing the decision. SSI and Medicaid are a popular subject on this forum. Quote Link to comment Share on other sites More sharing options...
bellajulz Posted April 13, 2009 Report Share Posted April 13, 2009 I am so with you! Anything I can do to help, let me know. Good luck! Quote Link to comment Share on other sites More sharing options...
all4family Posted April 13, 2009 Report Share Posted April 13, 2009 Hi,Thanks for speeking up, and wanting to make a difference! I want to also, and would be happy to help any efforts you make. Here is a website that may help. Its National Organization for rare disorders. I haven't looked at it yet, but will this afternoon when I have some extra time. http://www.rarediseases.org/Also I think some things that could be done to help is to get someone with good writing skills, or even use information already printed like on this site, get a good letter going for "when you visit a doctor." Then whenever you go to a doctor you can bring this information in to them, and hopefully they will read it. Something with the most basic things on it, and also explaining conditions comonly related to dysautonomia. Maybe in the form of a letter, with places to put your personal information. The one thing I have learned time and time again is that there is strength in numbers. The more people that we can get to speak up the louder we will be. If everyone wrote a letter describing how this disease affects there lives. Not that it is just a pile of symptoms together, but really to describe how difficult life can be when you don't know what to expect from moment to moment from your own body. The way that little things that others take for granted takes a huge amount of effort for us. Then have everyone send those letters in, sort of a campaign for the POTSIES. Where we would send them to, I'm not exactly sure yet, but I will look into it if there are any takers. I know there are a lot of very resourceful people here who probably already know where we could start. Just some ideas! Suzy Quote Link to comment Share on other sites More sharing options...
Chrissy Posted April 13, 2009 Author Report Share Posted April 13, 2009 I found the American Dysautonomia Institute, they are mostly about getting and keeping funding for research for a cure. They ask that you send letters to your congressmen and house representatives. Also sending letters to the president, vice president, and first lady. They have the addresses and fax numbers for all these people. Also a pamplet for dysautonomia awareness. www,adiwebsite.orgAlso the main page of Dinet has brochures they can mail to your doctors. Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted April 13, 2009 Report Share Posted April 13, 2009 Hi Everyone,all4family... my thoughts exactly!"Not that it is just a pile of symptoms together, but really to describe how difficult life can be when you don't know what to expect from moment to moment from your own body. The way that little things that others take for granted takes a huge amount of effort for us." So many doctors and people just look at this list of symptoms and then don't realize how debilated we are because of them. They see little parts and have a hard time seeing the big picture. Sometimes when I log on to the forum and read these things that I have either thought myself, said to others, or completely understand and could not have said any better, I feel like the "Cheers" theme song should start playing in the background . Even though we are all suffering everyday, there IS strength in numbers, even if it's just in the form of support, reassuring messages, and electronic hugs!~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
jump Posted April 13, 2009 Report Share Posted April 13, 2009 Does anyone know what percentage of the general population has dysautonomia? Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted April 14, 2009 Report Share Posted April 14, 2009 Does anyone know what percentage of the general population has dysautonomia?No, that's a good question. I am guessing it is really underdiagnosed though since so many physicians don't recognize or understand it.~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
mrsdavidson8605 Posted April 14, 2009 Report Share Posted April 14, 2009 I agree there needs to be more awareness. I've written several popular talk shows in the last year hoping for something, but never got an answer. I thought that the new show "the doctors" might be a good one for all of us to write in to. Seems like there needs to be more media coverage on it. EVeryone is so flooded with TV now days that would probably be a good avenue. Again though, strength in numbers. I'm sure if EVERYONE from this website wrote in to Oprah or the Doctors, they might consider doing a show, but just one person like me they are not going to listen to. I am willing to help out in whatever way I can! Keep your chin up! Quote Link to comment Share on other sites More sharing options...
Chrissy Posted April 14, 2009 Author Report Share Posted April 14, 2009 In 2002 they estamated a million people had dysautonomia. Now they say 3 million Americans have dysautonomia. Quote Link to comment Share on other sites More sharing options...
all4family Posted April 14, 2009 Report Share Posted April 14, 2009 Hi Everyone,all4family... my thoughts exactly!"Not that it is just a pile of symptoms together, but really to describe how difficult life can be when you don't know what to expect from moment to moment from your own body. The way that little things that others take for granted takes a huge amount of effort for us." So many doctors and people just look at this list of symptoms and then don't realize how debilated we are because of them. They see little parts and have a hard time seeing the big picture. Sometimes when I log on to the forum and read these things that I have either thought myself, said to others, or completely understand and could not have said any better, I feel like the "Cheers" theme song should start playing in the background . Even though we are all suffering everyday, there IS strength in numbers, even if it's just in the form of support, reassuring messages, and electronic hugs!~ Broken_Shell Hi Broken_shell, now I got the Cheers theme song running through my head! That is how I feel too. I come on here, and get at least peace of mind! And always support! And who can beat the electronic hugs! (I've never heard them called that. that is cute!)Chrissy I looked at that website, and it looks like a good place to start. I am going to start a letter as soon as I get my laptop back. Anyone esle planning on writing? I'm looking into something else too, but I'm sooooo slowwwwww....so when I get more information I will post it. Hope everyone has a nice symptom free (hey we can hope!) day!Suzy Quote Link to comment Share on other sites More sharing options...
ana13sanchez Posted April 15, 2009 Report Share Posted April 15, 2009 I totally agree!!! it is terrible that many doctors are just not interested in this subject, I think they can't even read or search!!!!! can you guys imagine being in Mexico with this illness???..... we are in many medical stuff long long way behind USA, so this is just like being completly alone here..... Quote Link to comment Share on other sites More sharing options...
potsgirl Posted April 15, 2009 Report Share Posted April 15, 2009 Hi Everyone~I looked at the rare diseases website, and POTS is not listed as one of their diseases. In fact, they don't even store any information in their database on our illness. I'm not sure how to go about requesting that POTS be added, but it's something to look into. The website does list dysautonomia, but only the familial type that people acquire at birth. Thanks for bringing it up, Suzy, and for everybody's good ideas. I'd love to be involved and help in any way I can. I do have a strong English background and could do proofreading if needed. Strength in numbers - Now let's get together and use our power!Jana Quote Link to comment Share on other sites More sharing options...
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