After the news broke that beloved comedianBob Sagetdied Sunday at 65, many of his friends and family encouraged fans to donate to theScleroderma Research Foundation, a cause that was extremely close to his heart.

Saget first supported the non-profit in 1991, and thenbecame an outspoken advocateafter his sister Gay was diagnosed with the rare autoimmune disease just a year later.

“My sister, Gay Saget, was a school teacher near Philadelphia. She was 44 when she was diagnosed with systemic scleroderma,“he toldNIH Medline Plus Magazinein 2019.“She got treatment, but it was just treating her symptoms with drugs like prednisone and cortisone. She had to move to Los Angeles to live with my parents because she needed so much help. She passed away just two years later.”

Bob Saget.Mike Coppola/Getty

bob saget

Scleroderma is a rare, autoimmune connective tissue and rheumatic disease that primarily causes inflammation in the skin, and can lead to inflammation in other parts of the body,according to the National Institutes of Health. The disease causes the skin to form hard, tight patches that can grow or shrink, and sometimes suddenly disappear.

In mild cases, scleroderma just affects the skin. But in severe forms, called systemic scleroderma, the disease spreads through other systems in the body and “can damage your blood vessels and internal organs, such as the heart, lungs and kidneys,” according to NIH.

And if scleroderma spreads through the body, it affects each organ in different ways. The lungs can develop scar tissue which can make it harder to breathe. Scleroderma in the kidneys can lead to elevated blood pressure and rapid kidney failure. Scarring of heart tissue could lead to congestive heart failure. And if scleroderma reaches the digestive system, it can cause heartburn, difficulty swallowing, bloating and diarrhea.

There is no direct cure for scleroderma, and instead different treatments that can target the various symptoms of the disease, such as steroid creams for the skin inflammation, blood pressure medications for any lung or kidney problems, immune suppressants and over-the-counter pain relievers.

Saget’s sister was diagnosed at age 44, and died two years later, in 1994.

“She needed so much help,” he toldNIH Medline Plus. “It is incredibly painful to have a loved one experience a condition like this. It is a very painful disease. My family is still having post-traumatic stress disorder. I don’t know how my parents endured.”

Bob Saget and John Stamos at the 2006 Cool Comedy, Hot Cuisine fundraiser for the Scleroderma Research Foundation.John Shearer/WireImage

Bob Saget; John Stamos

The organizationshared a tributeto Saget on Monday.

“It is with a very heavy heart that we mourn the loss of our friend and Board member, Bob Saget,” they said. “Bob was a champion for scleroderma patients everywhere dating back to 1991 when he first became involved with the Scleroderma Research Foundation (SRF), even before his sister Gay lost her battle with the disease in 1994. Bob was a deeply caring father, husband, and colleague, who was unreservedly committed to the mission of the SRF.”

TheFull Housestar said ina May 2021 Instagram postthat it was “one of my life’s missions to help find a cure for this disease.”

“There are new drugs specifically for scleroderma that are helping people,” he toldNIH Medline Plus. “But we have a long way to go to get to even more effective treatments and eventually a cure.”

And Saget said that when he meets people with scleroderma, “my word to them is don’t give up hope, because we are making incredible progress.”

To donate to the Scleroderma Research Foundation in Saget’s memory,click here.

source: people.com