chronic illness

Not Too Rare To Care

Yesterday was rare disease day 2023 * and I want to spread some awareness on one of my illnesses that is categorised as rare (which is: it affects less than 1 per 2000, CIPO is 9 in 1.000.000): Chronic intestinal pseudo-obstruction (CIPO) Like many other rare illnesses, CIPO is complex and its progressed form lacks… Continue reading Not Too Rare To Care

chronic illness, motility, my journey

A Leap of What?

Bad News and Some Further Neurogastro Stuff First of all, some bad news that I will compress and explain as rationally as possible. I received the results of the neurogastro tests . Unfortunately, the neuropathological evaluation of the full thickness resection shows a (congenital)* myenteric hypoganglionosis/dyganglionosis/in segments an aganlionosis and also a ganglionitis. My enteric… Continue reading A Leap of What?