Hi, we are the “The Elephant in the Room” — what no one talked about in my first husband’s family — Huntington’s disease. HD is often kept from family, friends, and community.
HD came unexpectedly into my life in 1987. My husband, Pep, and I had three young children, (ages 9,5,1). His family was told their dad (in the 1950’s) died of a brain tumor-his personality changed and he was aggressive. Ten siblings were clueless of Huntington’s disease —“The Elephant in the Room.”
Pep would say things like, “I know what I want to say, it just won’t come out,” or “I can’t write my name anymore.” We were devastated to learn that he could live 5 years or 20 years, our children had a 50/50 chance of inheriting HD, and no cure. That was the only information provided and we were sent on our way. It was our task to inform his family members that HD was now a part of their lives — many family members were reluctant to be a part of our lives after learning of HD.
Pep died at the age of 47 years from HD, a son 37, is now in the later stages of HD, a son tested negative, and my daughter has opted to not test. Bradley had a daughter and son (ages 9, 10) die from Huntington’s disease; Jessica has a daughter at risk.
I married Pat and he has been a huge part in helping my family cope with HD, helping me raise my family, and spends many hours promoting awareness. We helped start a support group and affiliate, via HDSA, as we want to promote awareness in our community, find families like ourselves, and provide education. Finding new HD families reinforces and encourages us that we are making a difference! Our way of coping with HD is our support group, affiliate, family and friends.
We want “THE ELEPHANT IN THE ROOM” to be “FAMILIES IN THE ROOM” discussing and making informed decisions about HD. EVERY family member deserves the right to know about HD!