Connect with our local chapter:
By Matthew Santamaria (msantamaria@hdsa.org)

Elaine Hanner met the love of her life, Allen, in college. They would eventually get married, have two children and settle in North Carolina. However, their relationship would be tested.

When Elaine and Allen were in college, Allen’s grandfather was in the late stages of Huntington’s disease (HD). This is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

His grandfather would later pass away as Elaine was pregnant with her first child. Elaine and Allen named their son after him. During that same time period, Allen and his family started to notice symptoms of HD in his mother.

The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. This includes personality swings, mood swings, depression, impaired judgement, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.

“I didn’t want to accept that this disease, that I really didn’t understand, could be genetic,” said Elaine. “I didn’t want to believe that my husband, who was so perfect, could ever inherit this awful disease. I began to see the changes in my sweet mother in law and was so heartbroken for what my husband’s family was going through.”

Four years after her second child was born, Allen’s mother was officially diagnosed with HD. The news hit her husband very hard and she began to research more about HD.

“Being a nurse, I thought I really should understand this disease better,” Elaine explains. “In nursing school, they only briefly talked about HD and I had never had a patient that I had taken care of with HD.”

Once her children were going to school, Elaine started to see behavioral changes in Allen. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease.

However, she ignored the changes because of the stress level of his job. Allen was a law enforcement officer that worked more than twelve hour shifts and it can be a stressful position.

It would later become more apparent that Allen was changing as his fellow officers were noticing it too. Allen was finally sent for evaluation. Each year, 5-10% of at-risk patients are tested.

On September 12, 2017, Allen Hanner tested positive for HD.

“Our world stopped!!! He had to retire from the job he loved," said Elaine. "The option of carrying a gun on a daily bases was NOT option.”

Since then, the family has adjusted to a new norm as his mother is in the late stages of the disease.

“She has truly given HD a hard run,” Elaine explains. “She has participated in so many of the study trials. I thank her and all the others that have participated because they have helped the researchers come to know and understand HD better. We now have HOPE!”

Allen is going to fight this disease head on as he goes to the Vanderbilt University Medical Center in Nashville, Tennessee. This is one of the 50 HDSA Centers of Excellence that provide an elite team approach to HD care and research. Professionals have extensive experience working with families affected by HD and work together to provide families the best HD care program.

“The medical center has been amazing at helping us figure the rights meds to manage the worse of the HD symptoms,” Elaine explains. “We are forever grateful for the all the providers there at Vanderbilt. They have an awesome team!”

On October 19th, 2019, Allen's mother passed away due to complications from HD.

Elaine has a message for the HD Community:

“HD patients have hope they’ve never had before. We have hope in God, we have hope in a cure, and we hope in a better future for HD patients. I believe that my children will soon not have to worry about the disease for themselves, as a cure is so close!!”

###

Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 41,000 symptomatic Americans and 200,000 at-risk of inheriting the disease. In less than 10% of cases, juvenile Huntington’s disease (JHD) affects children & adolescents. JHD usually has a more rapid progression rate than adult onset HD; the earlier the onset, the faster JHD progresses. HD is described as having ALS, Parkinson’s and Alzheimer’s diseases – simultaneously. HD is characterized by a triad of symptoms, including progressive motor dysfunction, behavioral disturbance and cognitive decline.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.

This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at msantamaria@hdsa.org