Arches. Photo by Daniel Chia
HOPES: Huntington's Outreach Project for Education, at Stanford
May
21
2013

“Learning to Live with Huntington’s Disease: One Family’s Story” by Sandy Sulaiman

Published: 2007

Length: 176 Pages

Summary:Learning to Live with Huntington’s Disease” is a compilation by journalist Sandy Sulaiman’s family about what it’s like to live with HD in the family. It starts off with a chapter by Sulaiman describing what it was like to discover that she had HD and how the diagnosis changed the rest of her life. Her unaffected sister, Wendy, writes the next chapter and discusses her experience with “survivor’s guilt” for not having inherited the gene for Huntington’s disease. Sulaiman’s older son, Brom, and younger son, Danny, write the next two respective chapters of the family book. Both highlight how they cope with their mother’s symptoms, their family’s worries, and their own 50% risks of inheriting the HD gene. Chantel, Sulaiman’s daughter-in-law and Brom’s wife, talks about her decision to marry into a family with HD knowing that her husband has a 50% risk of inheriting the gene and their potential children carry a 50% risk if the father does have the gene.  Sulaiman’s husband, Phil, pens one of the longer chapters of the book. He describes how HD impacted his marriage and his role as a caregiver, and gives advice from the perspective of a  person who sees just how messy and devastating HD can be. Sulaiman ends the book with a chapter about her father, Brian, who gave her the HD gene.

This book gives a unique combination of perspectives of people who are directly and indirectly affected by having one person in the family with HD. The lengths and tones of each chapter vary, but overall every character gives advice, addresses common and uncommon questions, and personalizes HD. It is especially appropriate for HD patients and caregivers looking for shared experiences, as well as medical professionals and outsiders who want to learn more about this rare disease.

CMB 05/21/2013