What is scleroderma, the disorder Bob Saget led a fight against during his life

As people learned about the death of comedian Bob Saget, many close to him suggested that a donation to research into a medical condition his sister suffered with and died from would be a fitting tribute to the star of the 1980s and 90s sitcom “Full House.”

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Saget was a longtime supporter of the Scleroderma Research Foundation, an organization that raises funds for research into the autoimmune disorder that claimed his sister Gay’s life in 1994.

“My sister, Gay Saget, was a school teacher near Philadelphia. She was 44 when she was diagnosed with systemic scleroderma,” he told NIH Medline Plus Magazine in 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.”

Systemic scleroderma is an autoimmune disorder that affects the skin and internal organs. According to the National Institutes for Health, the disorder is “characterized by the buildup of scar tissue in the skin and other organs.”

“The fibrosis is caused by the body’s production of too much collagen, which normally strengthens and supports connective tissues. The signs and symptoms of systemic scleroderma usually begin with episodes of Raynaud’s phenomenon, which can occur weeks to years before fibrosis.

“This may be followed by puffy or swollen hands before the skin becomes thickened and hard. Fibrosis can also affect internal organs and can lead to impairment or failure of the affected organs. The most commonly affected organs are the esophagus, heart, lungs, and kidneys.”

Raynaud’s phenomenon is a condition in which cold temperatures or strong emotions cause blood vessel spasms in the body, which blocks blood flow to the fingers, toes, ears, and nose.

According to the Mayo Clinic, scleroderma affects women more often than men and most commonly occurs between the ages of 30 and 50.

“There are many different types of scleroderma. In some people, scleroderma affects only the skin,” according to the clinic’s website. “But in many people, scleroderma also harms structures beyond the skin, such as blood vessels, internal organs and the digestive tract (systemic scleroderma). Signs and symptoms vary, depending on which type of scleroderma you have.”

The symptoms vary, but the Mayo Clinic lists these:

• Hardening and tightening of patches of skin. These patches may be shaped like ovals or straight lines or cover wide areas of the trunk and limbs. Skin can appear shiny because it’s so tight, and movement of the affected area may be restricted.
• Raynaud’s phenomenon, where cold temperatures or strong emotions cause blood vessel spasms in the body.
• Digestive symptoms such as heartburn or difficulty swallowing. If the intestines are affected, you might have cramps, bloating, diarrhea or constipation.
• Various problems with heart, lungs or kidney function.

Saget produced a made-for-TV movie that was based on his sister’s fight against the disease and spent the years after her death supporting and raising funds for the Scleroderma Research Foundation.

The organization issued a statement Monday on Saget’s death.

“It is with a very heavy heart that we mourn the loss of our friend and Board member, Bob Saget,” the organization 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.”

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