MINNEAPOLIS (KMSP) - University of Minnesota research focused on a specific type of muscular dystrophy is giving patients renewed hope.
“Basically each year you find you lose more and more ability to lift, to walk," said Marge Brchan.
Diagnosed at 19 years old, Brchan has battled the effects of facioscapulohumeral muscular dystrophy or FSH most of her life.
“It was very hopeless,” said Brchan. "They knew very little about the disease. There wasn't anyone focusing on the disease.”
The genetic muscle weakening condition is among the common forms of muscular dystrophy, yet according to the FSH Society is largely unknown to the public or even to most doctors.
“Patients with this disease, one of the saddest things that happens they are robbed of their ability to smile,” said Professor Michael Kyba.
Kyba and his staff at the University of Minnesota are doing grant driven research now that the gene causing the disease has been identified.
“The hope comes down to there is actual work being done to discover the drug. About 10 years ago, we didn't know what gene caused this disease,” said Kyba. “That's our hope that someday in the near future we'll have candidates that we can actual take to clinical trials. “
Brchan is one of dozens of Minnesotans volunteering everything from blood samples, muscle biopsies, stem cells, anything she can to help the research.
“I’ve participated in a few research studies over the years, but nothing that is this concerted effort that we see now internationally,” said Brchan.
Two of Brchan’s three children have the same disease, along with four of her eight grandchildren. From her view, the hope behind this research is for them.
“I do have hope," she said. "I'm 72, the hope is not that I'm going to start running marathons or anything like that, but for my children and grandchildren."
For more information about FSH, visit fshsociety.org.
For more information about the research being done at the University of Minnesota visit mdcenter.umn.edu