Dysautonomia As A Chronic Illness

[Guest malosp]

Just curious, I was just reading your poll on the forum about how long it took for all of you to get diagnosed. The majority said over 10 years!!! Wow, how did you handle it for 10 years before you were diagnosed? Is this a chronic disease that just makes your life miserable but you can expect to have a normal life span?

And I guess my other question is when people get better to they write? Have you seen a lot of people come and go over the years that have gotten better? Any stats on how many people have dysautonomia in the United States?

[dizzygirl]

well as I have read and heard thru word of mouth that there are between 500,000-1 million people in the united states that have some form or dysautonomia..

as far as people getting better .. there is no cure for POTS.. and it is a chronic illness. but there are people who do well with treatment.. and are able to live more productive lives.. and then there are others who can not.. for whatever reason..

pots-dysautonomia generally speaking is not "suppose' to shorten you life spand... but it certain can make life not so fun at times.. and hard to cope with..

good luck to you on finding a doc to treat/properly dx you..

[Lukkychrm42]

Welcome!

Well, dysautonomia isn't a disease, but it is considered to be a chronic illness. Recovery rates and degrees vary from person to person, so it will probably depend on where your POTS came from. And keep in mind that this forum isn't necessarily an accurate representation of the POTS community as a whole, and that there are some POTS patients able to lead perfectly or practically normal lives.

They *generally* say that POTS isn't life-threatening, but lifestyle-threatening.

I hope you're finding positive treatment!!