Patients Castleman disease
Topic of the discussion
Posted on 7/10/20 12:00 AM
How are you?
As you know, it can be scary for a loved one to receive the diagnosis of a rare disease like Castleman, and it may feel like the way forward is full of challenges and incertitudes. As a family member or caregiver, it can be difficult to find the right way to support your loved one and be there for them in the way they need.
So let’s share! What do you do to support your loved one living with CD through their diagnosis and life afterwards? And what do you do to care for yourself as a relative or caregiver?
Feel free to share your thoughts and advice, we’re all here to help one another!
Beginning of the discussion - 7/10/20How can I best support my loved one with CD? https://www.carenity.us/forum/castleman-disease/living-with-castleman-disease/how-can-i-best-support-my-loved-one-with-cd-2203
Posted on 7/10/20 5:04 PM
@Courtney_J You hit the nail on the head. My family is just so lost and confused on all of this. We don't know what's next - will he have this forever? will it come back? will it kill him? I think it's taken more than just a physical toll on my brother but a sort of psychological toll on the family. We try to be there for him but we don't really know what to say because we're just as lost and scared as he is. Is anyone else going through this?