Erdheim-Chester Disease (ECD) Community

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Erdheim Chester syndrome in Belgium

Hello everyone. My dad has diabetes insipid for 20 years and ele syndrome for more than 10 years. He takes minirin for his diabetes. He was treated by Dr. Haroche at the Salpetriere a Paris. We are from Belgium and the disease is not very well known here.
He had interferon for the syndrome. It was almost fourteen months of inflammation in the blood. My dad was always very active, he worked a lot. He retired, but he did not stop, but he needed a little nap that's all. Then 5 years ago the hell began. A depression, very severe or he refused to treat himself because he thought that it was the drugs that caused him his ills. So it's dark. 3 suicide attempts. After a hospital stay it was a little better and then all over again. Here he is cared for, he is at home. But to do nothing says that he suffers that he hurts everywhere, that he can no longer move, that there is no use on this earth, which he does not have for long.
Finally it is very painful for him and for my mother and me. I do not know what to do. No longer wants to go see the psychologist, refuses to do reeducation because he says he suffers too much afterwards. I'm lost, wiped out. Can anyone could help me?
Share your experience

Kathy_Brewer
moderator

Hi Stephanie,

I am so sorry to hear that your father is having so many difficulties. Depression is common with ECD patients. I hope you will let Prof. Haroche or your father's local doctors know about his depression. It may be that an antidepressant could help him.

For the pain, there are a few options. Some people see relief from bone pain when they take anakinra. Other patients report relief from the pain when they are placed on one of the targeted treatments for ECD (vemurafenib, dabrafenib, Cobimetinib, or trametinib.) Has your father ever tried one of these treatments? Has anyone talked to him about any of them? They are sometimes difficult to obtain, as they are all costly. However, more and more patients are finding access is available.

Are you registered with the ECD Global Alliance? You can email me a support@erdheim-chester.org to register. Once registered I can put you in contact with other people who have loved ones who suffer from ECD. This group can help you. It is most difficult to watch someone you love suffer. By joining the ECDGA you will learn that you are not alone.

I hope to hear from you soon,

Kathy Brewer
support@erdheim-chester.org

Merci pour votre réponse.
Mon papa prend déjà des antidépresseurs (3)mais cela fait aucun effet. On a deja change plusoeurs fois de psychiatre, essaye pkusieurs trairements mais rien ne fait effet.Cela le stabilise mais cela ne l aide pas. Je ne sais pas que les patients atteints de cette maladie souffraient de dépressions. Nous, on nous avait parlé que la dépression pouvait être causée par le interféron mais il ne en prend plus depuis 5 ans!
Le docteur Haroche est au courant de son triste état mais on ne sait rien faire de plus apparemment. Mon papa est suivi à mons par le Dr RAMON, qui a travaillé avec le Dr HAROCHE. Il faudrait que il fasse de l exercice ect mais il n à pas la volonté de le faire.
je suis à court de idée pour améliorer sa qualité de vie. Il me fait tellement mal au coeur.

Kathy_Brewer
moderator

Dear Stephanie,
I am deeply sorry for you and your father. This can be a difficult disease. I hope that the ECDGA might be able to put you in contact with other ECD patients and caregivers. In doing so perhaps you and your dad will understand you are not alone and that might help just a little. Many patients and carers have good ideas and experiences that might be able to help you both. I look forward to you registering with the ECD Global Alliance at - http://erdheim-chester.org/french-francais/ under the "Rejoignez l’Association des patients - ECD Global Alliance (ECDGA)" selection.

My thoughts and prayers are with you and your father,
Kathy
support@erdheim-chester.org