ALS can be hereditary

May 16, 2008 9:57:58 AM PDT
ALS is a degenerative, life-threatening disability of the nervous system. Each year over 5,000 Americans are diagnosed with it. ALS is more common in men than women and sometimes it can be hereditary.

Just when everything in her life was moving forward, a south suburban accountant suddenly noticed some changes in her physical abilities, and they kept getting worse.

"I have had problem with my hip so I went to see my orthopedic doctor and I mentioned to him all of a sudden I really couldn't pull my pants up and zipper were hard because my right thumb didn't do what I wanted it to do," said Carolyn Sexton.

Sexton was 42 years old when she was told she had ALS. It was not a big surprise.

"Because I knew my aunt had had this disease so I figured that there was a chance that I could have it too," Sexton said.

A year after she was diagnosed she had retired from her job as credit card supervisor for Ace Hardware Corporation.

"I was trying to be in the company three years just to get more full benefits and things like that, so until my boss asked to go to a convention and stand for three days and carry my own suitcases and all kinds of supplies, that's when I had to tell them that I couldn't do it and that I was going to be retiring in the near future," said Sexton.

Despite her limitations and challenges, Sexton focuses on the things she can do.

"I have nieces and nephews, and we play, it's not how I'd like to but we do. I still go on the computer and I talk to my friends and we get together and I shop and I go to church on Sunday," Sexton said.

Ninety percent of ALS cases are sporadic. Ten percent are hereditary, like the Sexton family, according to Lenore Sexton.

"We have it in our family and so all my nieces and nephews and my children kind of knew that one of them, maybe several of them may get this disease," said Lenore.

And it's a scary thing to know.

"They saw it, they know it, and they've prepared," Lenore said.

Having things to look forward to is how the Sextons cope with this devastating disability.

"We hope to get out to Millennium Park for some of the free concerts, we have a beautiful city and she loves it. She used to go downtown and spend a couple of nights at a hotel and go shopping so we might still do that," Lenore said.

"I want people to treat me the same cause in my mind and in my heart I am the same," said Carolyn Sexton.

The Sextons are active in the Les Turner Foundation, a not-for-profit organization that support and increases awareness for people living with ALS.

For more information on ALS go to www.lesturnerals.org or www.alsa.org.


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