What You Don’t Know About Huntington’s Disease

I thought I knew all there was to know about Huntington’s disease.

I’d seen it on an episode of House MD. Read stories about adults coming to terms with it after genetic testing. It was a devastating disease that caused horrible spasms. It had a strong genetic link and patients had a good chance of passing it along to their children.

What else was there to know?

A lot. It turns out, as I learned when I sat down to talk with Katie Jackson, President and CEO of Help4HD.org.

Her organization began to take shape in early 2010 with a simple podcast radio show.

A mother who had an adult child with Huntington’s disease hosted the show. She couldn’t find much information or resources on the disease—so she took the matter into her own hands and began to bring on experts to interview.

The podcast amassed thousands of curious viewers with similar stories. To this day, the show runs weekly and has over 270 episodes archived on iTunes that patients can still listen to. Their audience has grown to over 97,000 listeners. The show has covered Huntington’s topics but also branched out into exploring resources for other diseases and organizations like the Caring Voice Coalition, NORD and even Make-a-Wish.

“We are a true grassroots organization,” says Jackson. “Everyone in our organization, on our board, is affected by this disease in some way.”

Jackson is the wife of a Huntington’s patient and has three children at risk of developing it. When she talks about the organization and their goals—there is a real sense of urgency to get their message across to the mainstream. This disease could happen to any family—and it’s happening to many families right now.

Just a few minutes into our conversation the words Juvenile Huntington’s Disease (JHD) stopped me in my tracks.

Juvenile? As in children?

How did I not know this disease could affect children? I’d never even heard of a child having Huntington’s disease—only adults slowly coping with its severe, progressive symptoms.

Children with JHD live with heart-wrenching challenges, the most difficult one being the knowledge that this disease is always fatal. Unlike adult Huntington’s patients, they experience great pain from their spasms. They are also prone to grand mal seizures. They itch all over their bodies, all day. They require feeding tubes. They have cognitive and behavioral problems. Children as young as two-years-old have been diagnosed with the disease. Only two drugs have been FDA approved for the syndrome—and they only treat one of the symptoms. 

Doctors are hesitant to diagnose children with this rare, fatal condition. Instead many families suffer through the pain of misdiagnosis—going through the motions of treatment for things like Tourette’s, Aspergers, and ADHD. They also experience many of the adult Huntington’s disease symptoms like inability to swallow, walk, and talk.

This is why the organization created their Help 4 JHD program. It’s designed to promote awareness—where even the most experienced doctors and patients have never come across a case, many of these children do exist. And they desperately need our help.

They started their first fundraising event on June 13^th, 2015. It was a walk in McKinley Park in Sacramento. They raised $23,000 that day. All of it went to a research lab, the only one working on a treatment for Juvenile Huntington’s Disease.

How is the organization helping to bring light to what these patients and their families are going through? Patients, caregivers, even Huntington experts have flocked to Help 4 HD’s “Huntington’s Post” to share their stories and experience on their blog.

“We’ve had articles written by a child who was 11-years-old who watched his grandfather and father pass from the disease. His article was an intense, real-look at what a Huntington’s-effected home is like,” says Jackson.

There have been other large projects the organization has undertaken to educate the public. One such project is a documentary they filmed called “The Warrior: Fighting the Incurable Juvenile Huntington’s Disease.” It took almost a year to film, mostly on iPhone cameras.

“It turned out amazing,” says Jackson. “We’re excited to share it with the community, and are planning on entering it in some film festivals this year.”

Until then, their stories can be explored through an anthology they published called “Life Interrupted.”

Bringing this education to the public has been invaluable. Huntington’s patients have often faced discrimination in public.

A few years ago, a pedestrian was walking down the street when she saw a man with two small children. The man looked disheveled, drunk, and was unresponsive to her questions. Assuming that the man was some sort of obstinate drug addict the police tackled and tried to restrain the man who was, at this point, flailing his arms and legs.

The pictures of the aftermath of this incident were shocking. The man was horribly injured. He had been unable to help the spasms, of course—and he couldn’t respond because he was gargling on his own blood.

The police had no idea. The pedestrian had no idea. Once the incident reached the news, Jackson and her team jumped into action.

They quickly started working on a curriculum for law enforcement. How could they help policemen distinguish between a Huntington’s patient and your average belligerent citizen? They created brochures, handouts, and videos. They came to law enforcement conferences and set up booths. They even loaded all of their materials onto USBs and sent them to police chiefs across the country, hoping that they would incorporate the material into their training programs. When the funds ran out to keep buying the USBs? TEVA Pharmaceuticals stepped in so that Help 4 HD could keep going.

In San Diego, Jackson had a chance meeting with a man at LEEP (Law Enforcement Exchange Program) who wanted to shake her hand and to let her know that he’d found her training material, uploaded it onto their employee website and wouldn’t let an officer hit the street until they’d gone through all of the materials.

Thanks to their program, your local police know more now than ever before about who is a danger to society—and who is need of medical attention.

One of the programs the organization is most proud of is their Help 4 HD Family Relief Fund.

“Huntington’s disease brings financial devastation to these families,” explains Jackson. “You have to think: okay, the patient can’t work anymore—but someone has to be the caretaker full time. These families are often losing two incomes at once without very much warning.”

The program has been able to assist families with everything from utility bills, to Thanksgiving dinner, to making sure there’s a present underneath the Christmas tree. This December the organization was able to distribute Toys’ R Us gift cards to families in need. They’ve also been able to help pay for the cost of weight blankets for children with JHD.

The organization hosts educational symposiums to help families work together to create solutions. In a program called HIPE (Highly Interactive Patient Education) attendees are allowed to write down a scenario involving a Huntington’s disease issue and the panel of experts (often a neurologist, a nurse, a psychologist, and a genetic counselor) together with the audience tackle these issues and open a grand discussion on what different tactics one can use to overcome them. It’s a vibrant and exciting way to teach. When the organization aired it live on Facebook they had over 2,000 viewers actively following along!

Awareness, Jackson believes, is the biggest challenge the community faces. When children are misdiagnosed they can experience so much disappointment. There are therapies to aid these patients and they are formatted uniquely for the JHD child. There are over 26 support groups for patients and their parents on Facebook. There is a community of support available to aid in every step of the journey.

Learn more about Huntington’s and Juvenile Huntington’s Disease at Help4HD.org.