Get Dysautonomia As A Recgonized Disease (People With Pots)

[needafix]

At first I thought I was the only one with this disease. Since 2011 I was told it was rare but now after finding this site (2015), I see there are thousands of us. Is there a way to get medicare and the insurance companies to see that this is a large concern. I dont even think pharmacies know the seriousness of our problem. Have any of you had your brand of perscription changed and was told it is all the same, well all perscriptions brands are not the same. Have you gone into the hospital or Drs. office and kept there because your blood pressure was too high or low? We have enough to write a book. What do you think?

[Sunshinegirl]

I think writing a book would be a great idea! I don't know how many books out are out there if any but there are some blog sites. Unfortunately, many with this condition have a hard time keeping up with live let alone maintaining a site as an individual. So your idea of being collaborative is perfect!

I have great research and writing skills. ( I don't use these skills here because I write in my own voice) I have a ton of experience writing and know all the rules about citation. I can analyze and synthesize information. I would not mind being the person to put all the information together in an editorial capacity.

One of the easiest ways to do this is to have people write their story because there are different causes and nuisances. They will have to give written permission to have it published. A person can use a pseudonym or a real name. It does not matter. Then collect the stories and do minor editing if needed. This could be a portion of the book. The book would could be in sections like: What this disease is and break it down into subtypes, then a section about causal links such as small nerve damage, TBI, genetic correlations, other disease correlations (like lyme) etc.. , then treatments that are used. I think including a big section about the social emotional impact is SO VERY IMPORTANT!! If I were editing this book, I would likely put peoples stories in the sections based on relevance to support the information being presented. In this way, it can be both informative but not "dry". At the end of the book we can compile all the best resources out there.

I think I would be more likely to read a book if it was actually written by people dealing with the condition.

Then, the book can be published as an e book very easily with little monetary investment. Proceeds could go to an organization that is working on better treatments and quicker diagnosis.

Maybe DINET could help facilitate this process and the proceeds could go here.

Lets get started!

[Bigskyfam]

There is a dx code now in the US

Progress!

[Natops]

Well Dysautonomia, POTS, SFN, etc… these are all symptoms. What’s causing them (the underlying cause) is most probably a disease. We all probably have different causes/disease that are producing these similar symptoms (POTS, etc). Symptoms can have diagnosed codes and be treated. Just getting doctors to confirm our symptoms is challenging enough…Unfortunately for many people, finding out what the root cause is even harder and in many cases unattainable. Fortunately we have places like this site and Facebook to connect with each other and share information.

[Nymph]

This is a great idea!

[Katybug]

While I would like more recognition and understanding for our illness, POTS is a relatively rare phenomenon statistically speaking. Although there are thousands of us, as a percentage of the world population, it is a minute number. When compared to the numbers of people affected by heart disease, cancers, or AIDS, it becomes apparent how rare our condition is.

[Sunshinegirl]

Other situations get called diseases but we get called a cluster of syndromes. Its great that we get to talk to each other but until last year I personally wasted my time and money on so many doctors that I lost count. Not many Drs. are here learning or many of us would have had a dx a very long time ago and I, who had a dx years ago..had no treatment suggestions until January.

The gap needs filling.

Unless we put a real face, moving and motivating stories and a call it what it is, not much will change very fast if at all. We don't have to know all the possible causes to bring light and education. As a collective, we likely know more than we think we know...and the rest is just research. This is not just a support forum but a think tank. We are all highly invested. I don't see a barrier but an adventure that has yet to write itself as the real voice of many.

If we want change, we must make it ourselves.

[needafix]

I appreciate all of the responses. If we don't fight for our cause than who will. We all have our own stories and can pinpoint when this came upon us. One day we could do things and the next day we could no longer do that same thing. As the days go on the less we can do. I think something in my system got lose or snapped. I thought I was a healthy person, I never smoked or drank or did drugs so I am trying to find out why I came down with something no one knows about.

I think we have to show the doctors that are doing the studies that we care and want them to continue. We need to give them more imput about ourselves and our numbers so that they can ask for different studies and find more financial backing for the studies.

[Sunshinegirl]

needafix

for that reason, I just began the process of signing up for 2 studies last night. They are listed on the main website of this forum. Im sure they will lead to more studies....and progress.

[needafix]

I thank you for signing up for the studies. I have also signed up for some studies. We have to find out if something is in our blood or maybe a broken vein or maybe even a germ that we all have in common. Why did we get this. OK so we all have this, now how do we correct it. All I have heard is there is no cure but that is information from years ago. The more studies that are out the more can be learned.