Erdheim-Chester Disease (ECD) Community

Learn how others live with Erdheim-Chester Disease (ECD) and share your story


by RaquelContre published 5 months ago

A veces sentimos como familia que nadie tiene una respuesta clara que ningún medico sabe que hacer con Diego, cuales son sus expectativas o cual sera su pronostico, en estos momentos vivimos lo mas parecido a un limbo, que es muy joven..., que es una enfermedad rara...., que hacer? necesitamos saber que hacer cual es el procedimiento después de su diagnostico, los médicos en Chile solo nos pide...

A diagnosis after 35 years of therapeutic wandering

A diagnosis after 35 years of therapeutic wandering

by JFDeleplanque published 6 months ago

By the age of 50, I'd had Erdheim-Chester Disease since I was 13, but it was not diagnosed until 2014.

Hello. My name is Jean François D. and I'm 50 years old. I'm married and live in northern France.
The diagnosis of Erdheim-Chester Disease (ECD) was made by Professor Hachulla's teams at CHRU in Lille, in March of 2014, following a 3-week long hospitalization. The firs...

It's a beautiful rainy day

It's a beautiful rainy day

by kelly70 published 9 months ago

I have been sick since 1997. It has been a struggle and certainly I have grown and had the opportunity to live life to the fullest. I have been blessed. My story starts in 1997. I was diagnosed with cardiac sarcoidosis. It was a very rare disease at the time. I was told that I would die most likely within a year. I found a doctor through the Oprah Winfrey show that could help me. I started trav...

Freshly 'diagnosed' ECD

by Michiel published 10 months ago

Hello, I just got diagnosed with ECD. It's not a 100% diagnose though, but since it's getting near to my brain, they had to act and ECD fitted the profile the best. Here's my story. Hi there

I’m a 37 year old man from Amsterdam in The Netherlands.
Since 2003 I have my sisters kidney cleaning my blood and it’s doing great!

Last March I was having a lot of stomach and lower ...

Testimony about my mother who suffers from Erdheim-Chester disease

by Maurine published 11 months ago

It is about telling how the disease manifested itself, was diagnosed and taken care of. It is thus the beginning of a story that I hope will allow her to regain better health. My mother who is now 76 years old lives in a french island in the Caribbean, The Martinique, and I, live in the sister island, The Guadeloupe. Four years ago, my mother started to lose weight, to have insomnia, and at the...


by marinodan73 published about 1 year ago

ECD WHY ME The cancer in Me
Cancer? Are you telling me I have cancer? How could this be possible?”
These were the words I nervously said while my tears running through my face. And my wife was holding my hand. She was astonished.
I had been having symptoms of...

A long story

by Dan13 published about 1 year ago

Histiocytosis of the bone diagnosed in January 1995 (afterwards renamed histiocytosis X and, finally, Langerhans cell histiocytosis). Cardiovascular non-Langerhans cell histiocytosis (Erdheim Chester disease) diagnosed in November 2009. Several arteries of the trunk involved.
As to bones: skull pain in 1993 - left knee pain in 1994 - hypertension in 2004.
Skull: not taken in charge despite t...

Newly diagnosed

by staceybork published about 1 year ago

If I do not test positive for BRAF V600E mutation, does vemurafenib not work? I have recently been diagnosed with ECD I think by Mayo in Rochester. However, I do not know at what point it is actually “confirmed”. I had a bone scan that shows inflammation in several of the long bones. I had a growth partially removed from my thoracic spine with large numbers of Tcell and histiocites. Inflamm...