Author Topic: Brain donation may be helping to understand PML  (Read 152 times)

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Offline agate

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Brain donation may be helping to understand PML
« on: August 24, 2016, 03:00:14 pm »
This story ran on the Upper Michigan TV station WLUC, August 24--about a couple whose daughter died at 42 of complications of MS that are later described as PML. The couple donated their daughter's brain to the NIH and apparently that brain has helped in the effort to understand more about PML.

Quote
Brain donation leads to medical breakthrough


By Harri Leigh

HOUGHTON, Mich. (WLUC) -- "Michele, I love you and miss you so much," Elaine Loughead said.


It has been nearly four months since Elaine Loughead said goodbye to her daughter. Forty-two-year-old Michele Loughead died of complications related to multiple sclerosis on May 3.

It has been nearly four months since she said goodbye to her daughter. Forty-two-year-old Michele Loughead died of complications related to multiple sclerosis on May 3.

"She did a lot in her life," Michele's dad, Mike Loughead, said. "She was a professor at Michigan Tech. She was a CPA. She had a degree in philosophy."

Even after her death, Michele's brain is helping to advance medical science. She donated it to the National Institutes of Health (NIH) in Bethesda, Maryland. Researchers there found patterns in her brain that help explain symptoms seen in other patients. In a letter to the Lougheads, they said partially thanks to Michele's brain, they finally understand more about the development of the infection that ultimately killed her, progressive multifocal leukoencephalopathy (PML).

"It restores my faith in the medical field that they're seriously looking at what causes the PML," Mike said.

Some researchers have said it is caused by Tysabri, the immunosuppressant drug Michele was taking for the MS. It can leave the body vulnerable to certain infections, including the virus that causes PML.


Now, Michele's parents are crusading to raise awareness about PML and Tysabri. Patients taking Tysabri have between a less than one in 1,000 chance to 12 in 1,000 chance of developing PML, according to the Multiple Sclerosis Trust. The Lougheads said patients should know the drug's dangers. In May, the U.S. Food and Drug Administration added a warning to the Tysabri label that the drug can increase the chance of developing PML.

"I'm hoping that it also helps doctors to [explain] even more diligently the side effects of the drug to people that have MS," Mike said.

Elaine kept Michelle's memory alive by donating her hair to Locks of Love on August 23.

"My goal at that time was that my daughter would die peacefully," she said. "She would not die of grand mal seizures and she would not die from aspiration. Now, my goal in life is to honor my daughter Michele and to help others."

Elaine also said she was writing a book, to be called The Legal Lethal Drug, about Michele's experience.

The article can be seen here.
MS Speaks--online for 17 years

SPMS, diagnosed 1980. Avonex 2001-2004. Copaxone 2007-2010. Glatopa (glatiramer acetate 40mg 3 times/week) since 12/16/20.

 

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