How a Batavia man fights Huntington's disease

All of Ed Izenstark's life, a secret was lurking in his genes.

It was a life-threatening secret he didn't know to try to uncover. Izenstark was adopted, and neither he nor his parents knew what lurked in his biological family's medical history.

He discovered the secret sitting in a doctor's office when the array of symptoms he'd been experiencing was diagnosed as Huntington's disease, a progressive genetic disorder that usually surfaces when a person is between 30 and 50 years old.

For Izenstark, his unexpected diagnosis means he may have unknowingly passed his secret on to his three children. Statistically, the children of someone with HD have a 50 percent chance of having the fatal disorder, according to the Huntington's disease Society of America.

It would be easy for Izenstark to wallow in his situation, knowing that muscle spasms and moodiness will give way to diminished body control, speech, and thinking and reasoning before HD imprisons him in his body and makes him dependent on others for his care until complications take his life. And knowing his children could face the same fate.

But Izenstark and his family have a secret weapon in their fight against HD - hope.

They hold onto hope for treatments or a cure that can make a difference - if not for Izenstark, for his children.

They'll walk Sunday, May 21, in the 13th annual Team Hope Walk in Naperville to benefit the Huntington's society. In its first 12 years, the Illinois Team Hope Walk has raised nearly $700,000 for the HDSA, organizer Dave Hodgson said.

In addition to funding research, the organization supports patients with information, support groups and HD-focused medical centers while working to help doctors recognize and diagnose HD.

Today, Ed Izenstark of Batavia shares the story of his fight against Huntington's disease and his hope for a cure.

Ed Izenstark

Hi, I'm Ed. I am a loving husband, father to two amazing sons and a very beautiful daughter. This is my Huntington's disease journey.

It all started when I was adopted with no family medical history to reference. Many years of strange symptoms, multiple hospital admissions and plenty of sleepless nights later we finally found a clue that pointed us to genetic testing for Huntington's disease.

After realizing how little many physicians know about Huntington's, we finally found an amazing physician and his team at Northwestern who were able to give me tons of support.

They believed in the science, that in my lifetime I would see a cure.

Huntington's disease is an inherited disease that causes certain nerve cells in the brain to waste away. People are born with the defective gene, but symptoms usually don't appear until middle age. Early symptoms of HD may include uncontrolled movements, clumsiness and balance problems. Later, HD can take away the ability to walk, talk and swallow. They say that having HD is like having Alzheimer's, Parkinson's and ALS all wrapped up into one miserable disease.

I'll never forget the day the doctor called and said I need to come back a month sooner than scheduled. My wife and I went to meet with the doctor. We got my results and we were stunned. We never would have guessed this could be our new reality. We never thought our perfect family could be cursed. My wife didn't marry me thinking she would have to care for me, trapped in my own body - God forbid care for one of the kids like that.

As hard as it was, my wife and I held it together until the kids were asleep. Then it hit us, and it hit us hard. This doesn't affect only me, this affects all of us. All five of us fighting a disease with no cure.

Seems a bit hopeless, but that's where the Huntington's disease Society of America comes in.

I was contacted by a social worker with HDSA who was willing and eager to listen. I told her the whole story and she offered me support, resources and some hope that I didn't think existed.

Because of people like her - that is why I walk.

Through HDSA, I found Huntington Study Group, an organization that runs and manages clinical trials and helped me enroll in SIGNAL, a medical trial.

As so many have asked, why I would be a test mouse? To me, the answer is simple.

It's because in my family, we fight. To fight for a cure, that's why we walk.

Every couple of weeks, I fly to Tennessee for my treatments. I have a dedicated team that takes amazing care of me. They give me a chance at a longer life - a gift so awesome, a gift so undefinable, that words cannot express the gratitude, love and respect I have for them and the trial drug.

This trial, SIGNAL, has been a lifesaver for me. It gives me what I need to have hope. It gives my family hope that it's all going to be OK, and we use every drop of that hope to fight.

We walk for hope.

I won't allow Huntington's disease to destroy me or my family. I don't care that each of my children has a 50 percent chance of inheriting this curse of a disease because I know the cure is out there. I choose to believe that with good work, in trials like VX15, that a cure will be found and it will save my life. If not, then the science that I was a part of will save someone else's.

For all of my family, our hope is thanks to HDSA and HSG.

I walk for better days despite the absence of sun.

I walk for hope.

Please consider donating to HDSA. Visit hope4HD.com to support my team.

If you go

What: Team Hope Walk to benefit the Huntington's Disease Society of America

When: 10:30 a.m. Sunday, May 21

Where: Riverwalk Grand Pavilion, 912 Sindt Court, Naperville

Cost: $20 in advance online, $25 at the walk; fundraising encouraged

Info: hdsa.org/thwnaperville