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

San Diego resident Biby Gonzalez has known about Huntington’s disease (HD) his entire life.

HD 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.

“Five out of eight of my grandmothers’ children have tested positive, but many more relatives in Jalisco, Mexico are suffering of HD,” Biby explains. “Sadly, new generations have tested positive and are now showing the symptoms of HD. Even if we are all aware of what this disease means in our families, most have a difficult time facing our reality and by no means wish to talk about it, more or less get tested.”

When Biby was younger, he remembered his grandmother being sick but did not know why. She was having uncontrollable movements, walking like she was drunk, and was having terrible mood swings. At times, his father would leave his children at home because he didn’t want the children to see her behavior.

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

Years later, her family took her to the University of San Diego Medical Center and was officially diagnosed with the gene that causes HD. This is one of the 47 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.

His grandmother would soon pass away due to complications from HD. However, his HD story was far from over.

At the age of forty-two-years-old, Biby’s father tested positive for the gene that causes HD.

“There were two things that really helped us,” Biby explains. “The fact that my father was a great patient, attended all of his appointments, took his medicine, and never complained or questioned God. My father also participated in many drug and neurologic studies.”

After his father suffered a massive stroke, he was placed in the only institution that would accept HD patients at the time. “It’s important to note that 20 years ago not many institutions accepted HD patients, because HD patients are too young to be institutionalized long term,” Biby explains.

This was the same nursing home that Biby visited his grandmother every Sunday.

“It was extremely hard to have to walk the same hallways I walked as a child to see my grandmother, but now to see my dad,” said Biby. “Words cannot describe the pain I had to go thru during all those years of visiting that place.”

After twenty years of battling HD, his father passed away at the age of sixty-two-years-old in 2010.

“He made sure to leave in writing the donation of his brain tissue for research after his death,” Biby explains. “Having to donate part of his tissue was hard for us to do, but we had respected his wishes to continue helping others even after his passing. It’s been nine years since my fathers’ passing and I still have trouble fully committing to HD events, because it’s not easy to leave behind the pain caused by a disease that is still very present in my life.”

After his father passed away, Biby decided to be tested for HD.

The decision to get genetically tested is difficult to make. Each year, 5-10% are tested. It is never the right or wrong decision to be tested. There are people that see no benefit in knowing that they will develop the disease while others want to know in order to make informed choices about their future. It can take up to several weeks to receive your results from the genetic testing center.

“I started choking on liquids and food, my family was terrified because of my movements when I was asleep, my memory retention was terrible, and was having difficulty being social,” said Biby. “Everyone close to me was also able to see what was happening and was worried for me. I was sure I had HD; I just needed confirmation that I was also a carrier of the gene.”

For Biby, he tested negative which brought excitement to his wife and children. However, Biby was confused.

“It took many months for me to learn to live without HD,” said Biby. “Yes, I had what I now call “Mental HD”. Just like a child that lives in an abusive family, can become the abuser, well, that’s what happened to me. I had learned all the symptoms of HD and unconsciously I was recreating them in my mind and body.”

Once he tested negative, he was now planning his future without HD.

“I had to accept that it was not my fault that I was negative, while other family members were positive,” Biby explains. “I had to re-focus my effort to help educate the community, but now as an affected person and not the patient. Now I have the time and health to continue fighting this cause. I don’t think anyone can imagine how hard it is to tell someone that has suffered so much because of HD, to cut the chain of pain.”

Biby continues to stay active in the HD Community. He attends HDSA’s San Diego Chapter events include Team Hope Walks, Celebration of Hope, and many others. He is very active on social media pages through “HEAR Huntington’s disease”. This is a bilingual page (Spanish/English) that shares current information about HD and more communication with families.

Biby has also created the “Victor Gonzalez Santos Community Award” that has been given out at HDSA’s San Diego Chapter events. His father was very active in the HD Community on both sides of the border and always wanted to help those less fortunate.

“This award is given to a deserving family that has been working hard in our HD community to raise awareness and funds to continue the fight,” said Biby. “It’s an award of life, an award to remind us that we are NOT HD, just like my father was NOT HD. This award is a “Family Award” not an individual award, because HD is a family disease were the entire family is affected. An award because in spite of what they are going thru as a family, they still have the courage to help in their communities. It’s an award to say “Thank You” for all you guys for us, we do notice.”

Biby has a message for the HD Community:

“I would like to take this opportunity to thank all the investigators, all the donors that in one way or another are helping in this fight, all the organizations that are helping with fundraising and worldwide communication,” said Biby. “Thank you HDSA for giving us the opportunity to raise our voices and help strengthen our HD families, with the hope we so much need.”

Biby continues:

“All we need is hope for a brighter and healthier future and we are hopeful that research is at the tip of the iceberg. We are hopefully that soon the cure will be found.”

Biby recently spoke to Somos Uno TV about his HD Story. To watch the interview, click here

###

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. Each 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 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

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