The San Francisco Bay Area Chapter has a new volunteer, a freelance writer, Marisol Guzman, who is interviewing local families and writing their Huntington’s disease (HD) story. She then submits the article to media outlets in the Bay Area.  This is a new outreach project for the Chapter, human interest stories, to heighten awareness of this devastating disease.  The article is on my blog because it’s important to have the article appear on the Chapter’s social media platforms.   The following is Marisol’s first article.

    The Biggest Gamble by Freelance Writer, Marisol Guzman

Therese had life planned out. She couldn’t wait to graduate from college, get a job, marry John Marin, and start a family. John and his sisters Lora, Marcia, and Cindy were all close in age. Therese and the Marin siblings enjoyed partying and being young. The life ahead of this close-knit family was bright.

However, Therese often wondered what had become of John’s mother: Phyllis Iva. None of the siblings could remember why mom was in a state hospital and what led to her young death. The father refused to share the big family secret. Therese had no idea how this family secret would be akin to opening Pandora’s box.

“When I first heard of Huntington’s Disease, I didn’t know what it was but I knew it was bad,” Therese recalls. The Marin sisters, John and her gathered to discuss their mother’s cause of death: complications from Huntington’s.

Huntington’s Disease (HD) is “a progressive degeneration of nerve cells in the brain that affects movement, cognitive functions, and emotions.” HD is often described as having the symptoms of Parkinson’s, Alzheimer’s and ALS simultaneously that strikes young. It’s a rare genetic disease that currently has no cure.

Therese was internally conflicted. Do I start over and risk losing the love of my life or do I stay and take a gamble on a genetic disease impacting my family? Therese deliberated on her decision. With hope and naivete, Therese decided to stay with John. Together they lived their lives as fully as possible before HD’s unpredictability interrupted their plans.

Lora was the oldest of the Marin children. At age five, she stepped up and became a mother figure to her siblings during her mom’s absence. HD psychologically affected Lora which manifested into deep depression that led to self-medicating with alcohol. This maladaptive coping behavior led to a decline in her marriage, and at 41 she died of a cerebral hemorrhage.

Marcia was the second oldest Marin sibling. The AT&T professional was a stylish and unassuming woman. Things started taking a turn when Marcia began to wobble in her high heels at work. Her coworkers assumed that she was coming to work drunk.  In Marcia’s case, HD manifested itself with involuntary movements, unsteady gait, swallowing problems.  Marcia stayed independent on her HD journey with help from Therese managing her care.  Marcia died at 49 of a heart event.

Cindy was the second youngest in the family. Therese describes Cindy as a free spirit and   quintessential flower child. Cindy led an athletic and adventurous lifestyle full of kayaking and backpacking through countries around the world. Through her active lifestyle, Cindy was able to slow down HD and didn’t start noticing symptoms until her early 40s. As HD progressed, she developed dystonia, difficulty swallowing and cognitive decline.  Cindy died at age 54 of cardiovascular complications.

John and Therese watched his older sisters lose their battles to HD. There was unspoken anxiety of not knowing if John would be next. A test for HD was not developed until 1993. In 2016, John tested to know for certain whether HD would affect his two children as they were starting to build lives of their own. The family breathed a sigh of relief when John received a negative test result.

Therese had a hard time unpacking the 24 years of grief and it wasn’t until she poured her sadness into her book, Watching Their Dance: Three Sisters, A Genetic Disease and Marrying into a Family At Risk for Huntington’s that the hole in her heart grew smaller.

Although HD still has no cure, Therese holds hope in her heart that she will see a cure in her lifetime.  For now, Therese is comforted knowing there are many pharmaceutical, biotech and therapeutic companies conducting clinical trials on drugs that will manage HD symptoms allowing HD patients to have a higher quality of life.

Therese Crutcher-Marin is President of HDSA San Francisco Bay Area Chapter, a Huntington’s disease advocate, and author and a blogger.  Visit theresecrutchermarin.com