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By Matthew Santamaria (msantamaria@hdsa.org)

At the age of 6 years old, Cameron Howard was adopted. She knew that Huntington’s disease (HD) was in her biological family. It is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain.

Since she was young, Cameron never gave it too much thought as she considered herself invincible and never fully grasped what the disease was as she would continue to live her life.

At the age of 18 years old, she fell in love and eventually married her soul mate Phil. Cameron would go to college and graduated with different certifications and degrees. They would grow their family with three daughters including Braeton, Ashlin, and Payton. She was working full time as a medical assistant and phlebotomist at Indiana University. Life was going great.

Then, it started to change. Five years ago, Cameron was not herself. “I started to get depressed, lose empathy, trouble completing sentences, multi-tasking, mixing up numbers, and my microphone headset sound was making me lose my mind,” said Cameron. “The only answer we could think of was HD and if it was negative we needed to find out what was going on. If it was positive we would know what was causing everything and we could get a jump on medication.”

However, the result was not negative… it was positive. “I left work and parked in a random parking lot and cried and cried.” The changes in Cameron were symptoms of HD. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

Soon after, she would leave her job as you cannot have any mistakes in the medical field. Cameron would quickly go on disability.

After the diagnosis, for the first few years, it was taking a toll on the family as everyone was walking on egg shells. She knew that her children had a chance of inheriting the disease. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease.

“We couldn't find the right doctors and that was sending me over the edge,” Cameron explains. “So medications were all wrong, HD consumed our lives. Between breakdowns crying because we're affected by it, researching the disease including watching you tube videos (which I don't suggest at the beginning), and out of body experiences.”

Her panic attacks would be set off when the phone rang. Panic attacks would consist of a racing heart, feeling week, numbness in the hands and fingers, sense of terror, feel sweaty, chest pains, problems breathing, and feeling a loss of control.

Through the experience, she has kept journals as this helps her remember what happen as her memory is poor. This will help her never forget. Also, expressing yourself through words can ease the mind.

Then, things were starting to look up. Phil talked his doctor friend into becoming Cameron’s doctor. Since the change, she has received the right medication. “My husband is my rock and the best care giver anyone could ever ask for.”

Now, she was not depressed and noise was not bothering her. “I go out to the movies or shopping (not for too long), I still drive and enjoy life,” said Cameron. “I can't drive after 7 because my brain gets tired and I can only cook one dish meals, and only one event a day. We laugh and make jokes at my short comings.”

Her family is active in their community in Indiana as they want more people to know about the disease. Her children are now 22, 21, and 14. They have helped her in more ways than one. “They are the reason I go on.”

She wants others to know that they are not alone and enjoy life.

“Appreciate the small things and laugh ALOT,” Cameron explains. “Look at it as a blessing and not a curse, at least in our family it brought us closer together and we've met wonderful people throughout the community. There’s always someone willing to listen if given the chance.”

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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 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