Family Shares Hardships of Huntington’s

CLEVELAND — A Cleveland area family is silent no more.  They are spreading awareness about a degenerative disorder that attacks the brain and one’s ability to function.

Mackenzie Platten and her sister, Jesse Lis, say they have always been a close family.

But that bond is even tighter since their father, Michael Phillips, was diagnosed with Huntington’s Disease five years ago.

“It’s debilitating, very debilitating.   And I have to see my family suffer along the way,” Phillips said, struggling to form every word.

Dr. Mayur Pandya of the Cleveland Clinic Center for Neurological Restoration described Huntington’s Disease as a degenerative, genetic disorder that attacks the brain and slowly takes away a person’s ability to function.

“Over time we see involuntary movements occur.  Patients become less coordinated.  They may lose their balance.  Psychiatric symptoms can occur like depression, anxiety, irritability,” Dr. Pandya said.

Phillips is now 60 years old and Huntington’s may have gone undiagnosed for years.

The sisters first saw changes in their dad’s temperament.

“We noticed that my father got easily heated. Would often times get into arguments in supermarkets with little old ladies or start fights in the middle of the street,” Platten said.

Huntington’s runs in families.  All of Philips’ five siblings have it and both of his daughters have tested positive for Huntington’s.

The uncertainty is when the disease will strike.

“There are some really embarrassing things that come along with Huntington’s.  You know, depression, anxiety.  I have a hard time multitasking,” Platten said.

Lis spoke of the burden it places on the family.

“You will become dependent on someone else.  You will have jerky movements, you will have slurred speech,” she said.

Both women are wives and mothers and are doing what they can to keep Huntington’s Disease from controlling their lives.

As for their dad, medications help, but they live with the reality that right now there is no cure.  Yet, Phillips feels there is hope.

“I didn’t think I would make it out of the psych ward.  But I made it.  And I’m here.  I’m here five years later.  I can still communicate. I can still walk,” he said.

Platten is the president of the Northeast Ohio chapter of the Huntington’s Disease Society Association.

To find out more information about the disorder and upcoming fundraising and awareness events, click here.