The "lucky" ones, whose condition is called localized scleroderma, survive, but only in extreme pain.
Seventy per cent of those who contract general scleroderma do not survive, and only a third live more than seven years. In some cases, like Sharon Monsky's, sufferers cannot close their lips and can eat only bland, soft foods because even their teeth become agonizingly sensitive. Often misdiagnosed in its early stages as a harmless rash, scleroderma is caused by the body's natural collagen going wild and creating huge areas of scaly scar tissue.
He took Gay to see an amazing woman called Sharon Monsky who has suffered from scleroderma for about 15 years and who has done more than anyone to raise awareness about this disease. "In the end, it was Bob who made everyone face up to what was happening. "At first, Gay herself did nothing but laugh about it. "But everyone in the family just kept on making silly, asinine jokes. His poor parents were about to lose their only surviving daughter. "Bob had lost one sister and was about to lose another. "The sad thing was that Bob's other older sister, Andrea, died of a brain aneurysm in her 30s, so you might have thought that the Sagets would have been able to handle the prospect of tragedy. "They dealt with it all by constantly declaring, `She's not going to die,' and telling jokes. But in this terrible situation, they were also a dysfunctional family not able to accept the fact that Gay was dying. "We would do a scene and when it ended, you wouldn't hear Bob yell, `Cut.Ī happy Jewish clan, the Sagets had trouble facing up to the dreadful truth when Gay was told she was going to die. I was devastated for Bob because it was his sister's story and it was very hard for him sometimes, but also because of my own sister. "But it wasn't only Barbra's problems that put me in an emotional state.
Here I am shooting a movie about the true story of how a young woman died from this horrible disease and I've just found out that my sister has it. The anguished actress recalls: "I was going through a kind of devastation making this film.
So we both just ignored it.īut a few months later, when Bergen landed her role in tonight's drama, she realized where she had heard the name of the weird-sounding disease before.īergen, who reteamed with Mitchum for her Emmy-nominated performance as his wife in the classic TV miniseries "Winds of War" and "War and Remembrance," recalls: "I phoned Barbra and said, `Listen, I'm reading this script about scleroderma and I don't think we should kid around with this.Īfter Bergen's moment of realization, her stricken sister immediately consulted a scleroderma specialist in Santa Barbara, Calif. "Naturally, neither Barbra or I had ever heard of it. "She finally told me that a doctor had told her she could have this thing called scleroderma.
"She'd been complaining for about a year of not feeling well and about the fact that her legs felt funny.
In extreme cases of this most mysterious of illnesses, victims not only endure their skin hardening to the point where they are unable to bend their limbs they must also suffer appalling pain as their internal organs fossilize in the same awful way.īergen, who co-starred with Gregory Peck and Robert Mitchum in the original "Cape Fear" movie, says: "My sister called me about six months before I ever heard of `For Hope. In a terrible twist of irony, the 66-year-old actress was auditioning for her role when her sister Barbra, 57, was finally diagnosed as having the disease. Gay Saget died three years ago, at age 42, after losing a five-year battle against scleroderma the disease that slowly and agonizingly turns its victims' skin and internal organs to stone.įor the cast of "For Hope," watching Saget re-create the tragedy of his sister's life was a painful experience.īut none found it more painful than veteran actress Polly Bergen, who plays Saget and Gay's mom. The wisecracking presenter moves behind the cameras to direct a harrowing film based on the tragic real-life story of his older sister.