- V
- J
- S
Dear Friends, Colleagues and Family
Three months ago, my father was diagnosed with Castelman’s disease, a severe disfunction of the immune system which leads to hyper inflammation, multiple organ failure and death if not kept under control. Castelman’s disease is extremely rare and poorly understood in the medical community; it truly is a 1 in 100 000 disease and there are currently no known cure or universal treatment. Each case is specific and a treatment could work well on one patient yet remain completely ineffective on another.
After fighting for three months in intensive care, my father’s condition has slightly improved, although he remains extremely weak and confined to his hospital bed. I am sure that as a keen sportsman and marathon runner, this must be even harder for him. In any case, the road to recovery will be long and difficult and the likelihood of relapses remains high.
The least I can say is this has been an emotional rollercoaster and we have been through every possible emotional state as a family. A state of incomprehension at the diagnosis stage, when the Doctors could not determine what was happening. A state of fear and uncertainty when my father was dipping in and out of coma with no ability to see further ahead than the next day. A state of anger and frustration when he would relapse the day after the Doctors expressed more confidence in their ability to treat him. We have however never despaired and always remained strong and confident in my father’s ability to fight and overcome this.
In support of my father and other people fighting the same disease, I have decided to run a couple of trail running events near Grenoble, my home town in the French Alps. The first event will be a 42km run with 2,700m elevation gain on 23rd August. The second event will “only” be 20km in length with 500m elevation gain but will take place at night on 25th August. Some of you may know I am a keen runner with a few marathons under my belt but running in the mountain, uphill and over rugged terrain truly is a new experience for me!
As part of this, I am raising money to fund the fight against Castelman’s disease. Each donation, however small, would mean a lot. I would also encourage you to speak about my father’s story and raise awareness of this disease. Because it is so rare, Castelman’s disease does not receive much funding and generally lacks attention from the wider medical community; in fact, the only dedicated charity I am aware of is the Castleman Disease Collaborative Network. These guys provide tremendous support to patients and their loved ones, and are helping fund research to find a cure to this horrible disease. I will be sending all donations to the CDCN.
I trust you will find the time to check the below links and to talk about our story with your friends and family.
With my gratitude and warmest regards
Arthur
Castleman Disease Collaborative Network
https://www.cdcn.org
Event Website:
https://ut4m.fr/en
Three months ago, my father was diagnosed with Castelman’s disease, a severe disfunction of the immune system which leads to hyper inflammation, multiple organ failure and death if not kept under control. Castelman’s disease is extremely rare and poorly understood in the medical community; it truly is a 1 in 100 000 disease and there are currently no known cure or universal treatment. Each case is specific and a treatment could work well on one patient yet remain completely ineffective on another.
After fighting for three months in intensive care, my father’s condition has slightly improved, although he remains extremely weak and confined to his hospital bed. I am sure that as a keen sportsman and marathon runner, this must be even harder for him. In any case, the road to recovery will be long and difficult and the likelihood of relapses remains high.
The least I can say is this has been an emotional rollercoaster and we have been through every possible emotional state as a family. A state of incomprehension at the diagnosis stage, when the Doctors could not determine what was happening. A state of fear and uncertainty when my father was dipping in and out of coma with no ability to see further ahead than the next day. A state of anger and frustration when he would relapse the day after the Doctors expressed more confidence in their ability to treat him. We have however never despaired and always remained strong and confident in my father’s ability to fight and overcome this.
In support of my father and other people fighting the same disease, I have decided to run a couple of trail running events near Grenoble, my home town in the French Alps. The first event will be a 42km run with 2,700m elevation gain on 23rd August. The second event will “only” be 20km in length with 500m elevation gain but will take place at night on 25th August. Some of you may know I am a keen runner with a few marathons under my belt but running in the mountain, uphill and over rugged terrain truly is a new experience for me!
As part of this, I am raising money to fund the fight against Castelman’s disease. Each donation, however small, would mean a lot. I would also encourage you to speak about my father’s story and raise awareness of this disease. Because it is so rare, Castelman’s disease does not receive much funding and generally lacks attention from the wider medical community; in fact, the only dedicated charity I am aware of is the Castleman Disease Collaborative Network. These guys provide tremendous support to patients and their loved ones, and are helping fund research to find a cure to this horrible disease. I will be sending all donations to the CDCN.
I trust you will find the time to check the below links and to talk about our story with your friends and family.
With my gratitude and warmest regards
Arthur
Castleman Disease Collaborative Network
https://www.cdcn.org
Event Website:
https://ut4m.fr/en
Organizer
Arthur Modelski
Organizer