INDIANAPOLIS, Ind. – The text came from Jennifer Sepulveda’s sister in California.
“She said, ‘You need to watch this video.'”
Jennifer got busy doing other things, but when she sat down with her husband and hit the play button she was floored. The clip was for the new CBS medical drama Pure Genius and featured a wheelchair-bound character with the disease GSS, short for Gerstmann–Sträussler–Scheinker syndrome. It’s a disease that killed Jennifer’s father.
“Seeing the man in the wheelchair reminded me of my father. I have a picture of my father in a wheelchair kind of sitting slumped over, so that rang very true,” she said.
4 Fast Facts
- New CBS show Pure Genius hits home for Hoosier woman
- Show clip featured character with Gerstmann–Sträussler–Scheinker (GSS) syndrome
- She hopes show will educate public about the disorder
- Show premieres Thursday on CBS4 at 10 p.m.
In the show GSS is referred to as “Lou Gehrig’s disease on steroids” and while that may seem like jazzed up writing for an entertainment program, the reality of the disease is horrifying for sufferers and their families: Dementia, ataxia, spastic movement, slurred speech and deafness are just some of the effects of GSS.
“Before he died I remember seeing him in the nursing home and his muscles were just so rigid he couldn’t move. He couldn’t eat his food, couldn’t swallow. It was very ugly and very hard to watch.”
But her father is not the only one dealing with GSS, Jennifer has it, too. In fact, the disease runs in her family and has been traced by doctors at IU Medical Center as far back as 1700s.
“They call us the famous Indiana Kindred.”
Grace, Helen, Donald.
Grandparents, aunts, uncles.
The disease devastated their bodies and in a sense tore apart families because Jennifer says many of them wouldn’t acknowledge that there was a problem.
“My grandmother’s husband refused to admit that his wife was sick so no one ever talked about it.”
Jennifer says the problem continues today.
“In my immediate family it is very hard to discuss and yes, I have said many times that it feels like, you know, when you discuss it, keep it hush hush.”
The avoidance goes beyond talking about GSS; some family members are avoiding testing that would tell them if they too are afflicted with the disease that has no cure.
“My daughter has not been tested,” she says, and neither has Jennifer’s youngest sister.
It’s a personal decision she respects, but that’s where Pure Genius comes in. Jennifer hopes the show can open lines of communication in her own family and educate the public on a disorder that is estimated to affect only 5 people per 100 million.
“I can’t wait to watch the first episode.”
Pure Genius stars Dermot Mulroney and Augustus Prew. It airs on CBS4 Thursdays at 10 p.m.