I suffer from MdDS.
I decided to talk about my condition to shine a light on it.
MdDS is what is classified as an extremely rare disease.
And that makes it complicated and challenging to live with.
I’ve discovered that if you ever get an illness or disease, the worst ones to get are the ones that no one knows anything about, because there’s not enough knowledge, not enough practitioners know about it and not enough funding goes toward it. That’s MdDS.
Rare diseases have the kill-shot of being a double whammy — not only is there a vacuum of reputable science and knowledge behind the diagnosis and prognosis (sometimes no methods to do either), left in that wake are quack theories, self or non-professional peer diagnosis or just plain quackery. It makes for finding out real remedies with real efficacy much harder and exacerbates the anxiety.
These diseases are like the “Voldemort” of illness: no one dares or even knows the real name to even communicate it to your friends, family or even medical professionals. We are left with ultra long conservations of symptoms-based descriptions that then lead to more questions and perhaps more quackery.
It is a challenging disease to live with. Every one I’ve come across have good days and worse days.
For all of us who suffer from MdDS — I stand with you.