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My loved one has HCHWA-D. What now?

Talk about it

Sadly HCHWA -D is not treatable – for now anyway. As there is no known cure or treatment it would seem that ‘talking about it’ wouldn’t make much sense. However it has proven to be very important to many patients – someone to talk to, a listening ear.

HCHWA-D is not (yet) treatable

Currently there is no treatment available for HCHWA-D. It is also unclear if any treatment will become available in the foreseeable future. Doctors are able to diagnose the illness and can also make scans to assess how far the disease has progressed but that is the extend of what the medical profession can do (for now).

HCHWA -D is not (yet) influenceable

There is no textbook answer for ‘How to deal with the illness’. As each patient responds very differently to the disease and in view of the fact that the development of the illness cannot be influenced or accurately predictedeach case is unique. Even though it is recommendable to follow a healthy lifestyle and high blood and cholesterol under control no connection between high blood pressure, dietary habits, smoking or alcohol intake and HCHWA-D has ever been established. What you can do is Talk – talk you your loved one.

Try and make HCHWA-D an acceptable topic of conversation

Make sure you're there for your loved one. Offer a listening ear. Show compassion. Don’t forget that you know your loved one intimately and are in the best possible position to decide what to do in certain situations.

Talk to the HCHWA -D association

The association HCHWA -D is there specifically to bring patients and relatives in contact with people who are in a similar situation. We are also there to assist caregivers and other members of the family.
It is also possible to visit your local GP (General Practitioner) who in turn can refer you to a psychologist or specialist physician should you prefer.

Whatever you do, we strongly recommend that you and your loved one discuss your concerns  – with each other but also with other people in the know. Trust us, we speak from experience.