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Living with M.S., hope for awareness & treatment

Posted at 8:32 PM, Dec 02, 2015
and last updated 2015-12-02 22:32:09-05

TUCSON (KGUN9-TV) - Bruno Brunelle used to be an avid runner, a soccer referee, and worked in property management until he was diagnosed with multiple sclerosis about five years ago.

The disease affects more than two million people around the world according to the Centers for Disease Control.

Bruno said he lived a completely normal life before his diagnosis, not knowing he had M.S.

"I had the typical superman attitude that I could do anything," he said.

He found out about the disease, when he went into what's called a relapse.

"Your body completely shuts down," said Bruno.

Now, he often has pain, inability to sleep, and trouble concentrating. The worst symptom for Bruno though, is depression.

"Once you get depressed, you just don't feel like being here," he said.

The former building supervisor and property manager no longer works because of his M.S. He says that is frustrating, but his wife, Pamela, supports him.

"She's my rock," he said.

Both of them now want to spread awareness for M.S. and want to be one of the many voices talking about the disease, but they need help.

"More awareness, more support," said Pamela.

An M.S. treatment, relatively new to the United States, is now being used at Northwestern Memorial Hospital in Chicago. It is called hematopoietic stem cell transplant, or HSCT. It has been shown to drastically improve the lives of M.S. patients.

"There was no light at the end of the tunnel for M.S. patients until now," said Pamela. 

After learning more about the treatment, she is trying to help Bruno get it as well, but it is expensive. The treatment is about $125,000 dollars, money Bruno and Pamela don't have.

Right now, there are a few hurdles for Bruno to jump in order to get the treatment. One of the biggest is cost, made worse because the Social Security Administration does not consider Bruno to be disabled, even though his doctors do.

Bruno and Pamela are currently appealing to Social Security to have him considered disabled, that would mean they only have to pay about 20 percent of the total cost for treatment. Pamela says with that discount they would need about $55,000 to pay for the three month treatment and other expenses.

However, they may be running out of time. Pamela says the age limit for the treatment is 56 years old, Bruno is 55. They are hoping to get him to Chicago by next year.

Bruno and Pamela are holding an event on December 12th to fundraise for his treatment and also raise support. It will take place at the Tucson Rodeo Grounds from 10 a.m. to 5 p.m. and costs $10 to get in. There will be pony rides, barrel racing, monster truck rides, and more.