"I have a rare, life-threatening chronic condition known as Adipsia D.I. but no diagnosis yet."
About: Royal Brompton Hospital Royal Brompton Hospital London SW3 6NP
Posted by AdipsiaDIsufferer (as ),
Since the Summer of 2008 I do not sense thirst at all. Before that I was thirsty more frequently than is normal, drinking lots of water, juice and other non-alcoholic fluids, and urinating frequently.
My Diabetes Insipidus began in 2003 and I still have it, but without my ability to sense thirst I am often suffering episodes of severe dehydration. Also I have Thermoregulatory Failure. Adipsia and Diabetes Insipidus combined is a rare condition and, from all that I have researched, has a high mortality rate.
As a result of my body's inability to maintain adequate Osmolality and lack of Homeostasis I have developed a number of other serious health problems.
My whole situation is very complex and I am hoping to find someone in the media, as well as a highly Ethical and Compassionate Medical Professional to interview me and to help insure that the NHS does not inadvertently fail me and that my further diagnosis is done in as Ethical a manner as possible.
Too many Unethical things have happened to me since I have sought medical help through the NHS. Some things were finally diagnosed that I had figured-out myself. And I have actually saved my own life when it is my GPs who should have done so. Without Magnesium, Potassium and other supplements I would have been dead by now!
I have an appointment too see a top specialist who should be able to officially diagnose me with Adipsia D.I. Once that happens my chances of longer-term survival may improve. I will publish more about my condition as soon as I feel I can do so.
My wife and a few friends are witnesses to some of what has happened so far.
Does anyone here have a similar chronic condition?