Treatment Continued (?)

Februrary is 'Rare Disease' month. Please read more about the importance of raising awareness, improving care and support in rare diseases (including further references) in my post from last year. Examples for rare conditions are severe motility disorder such as chronic intestinal pseudo-obstruction (CIPO). More information can be found here including the information pack. Some…

In the Rain (Reign) of Pain

First of all, I updated the publication list below the last post regarding rare illnesses and CIPO. Another inpatient stay for pain management, so why not talk about pain? It goes on...even when it doesn't seem so. Life always finds a way and blooms where one wouldn't have expected it. The Pain's Reign (?) What…

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…

We Woof You A Merry Little Christmas

Dear all, We wish you a wonderful Christmas time. May the warmth, togetherness, love and joy of Christmas be with you throughout this time and the New Year.  Enjoy the heartfelt wishes, calmness and excitement. Believe in wonders, love and peace.  Warmest wishes also from my mum, Bo, Emmy and Einstein, Evita Thank you for…

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…