Huntington’s Disease Community Lives With Three Layers of Grief

Author Therese Crutcher-Marin, HD Advocate

Working the last ten years of my healthcare in Hospice, I saw how strong of an emotion grief is after losing a loved one.

I married into an Huntington’s Disease family (HD) and while I worked in Hospice, I had first hand experience with Anticipatory Grief when caring for hospice patients and in my personal life.  There are many HD families who have for years cared for a loved one, and who live with anticipatory grief because the HD prognosis is 10-20 years.   What is Huntington’s Disease

So what is Anticipatory Grief?    When a person or family is expecting death, it is normal to begin to anticipate how one will react and cope when that person actually dies.

How to deal with Anticipatory Grief

Over the past year, Huntington’s Disease families have been shrouded in three (3) types of grief: anticipatory grief, pandemic grief and grieving the  halting of the tominersen clinical trial and WAVE PRECISION-HD trials that do not support further development of WVE-120102 and WVE-120101.  These drugs held great promise to stop the progression of this cruel disease.

My plea to HD families is to reach out and not isolate yourself.  HDSA has online support groups and many online resources to help your family.     HDSA Locate Resources          

HDSA Support Group Center:  HDSA

We Can Never Lose HOPE….

I’m a HD advocate, Chair for HDSA San Francisco Bay Area Affiliate, an author and a blogger.

Watching the Dance Huntingtons Disease

Visit my website at:

100% of the proceeds from my book, is donated to the nonprofit, HDSA.

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