Bob Saget’s Battle Against Scleroderma, the Autoimmune Disease that Took His Sister’s Life

Actor Bob Saget was an advocate for scleroderma research, raising over $25 million to find a cure. Image courtesy of the Scleroderma Foundation.

Bob Saget, the beloved Full House actor who recently passed away, battled against a little-known autoimmune disease prior to his passing. The condition was scleroderma, and it was responsible for the passing of his older sister Gay Saget at the young age of 47.

Gay was diagnosed with scleroderma at age 44, a mere three years before her passing. She had suffered from unrelenting symptoms for years before her diagnosis, however, but doctors couldn’t pinpoint the cause. Her brother Bob had commented on his sister’s diagnosis journey, saying: “She had a lot of fatigue…it felt like her skin was on fire. She went to regular medical doctors that said that it could be lupus, it could be mental illness, it could be Epstein-Barr. They named everything except what it was.”  

Gay’s frustrating journey to diagnosis is no outlier in the chronic illness community. Many patients with chronic illnesses such as autoimmune diseases go years without a diagnosis, until their symptoms become severe enough to be diagnosed.

Dr. Fred Wigley, a professor of medicine at Johns Hopkins University, has studied scleroderma for the past 45 years. “[Scleroderma] can be a very terrible multi-system disease, but not in every patient,” Dr. Wigley said. With scleroderma, the body over-produces collagen, impairing the functioning of various organs. Common symptoms of the condition include tightening of the skin, finger and toe pain, arthritis, muscle weakness and trouble swallowing. It can also damage internal organs, especially the lungs.  

Gay was among approximately 300,000 Americans living with the disease. About 80% of these patients are women, most commonly between the ages of 30 and 50. The disease tends to be more severe in patients of color, for unknown reasons.

Bob said that his sister was treated with steroids, like prednisone and cortisone, but that the drugs failed to relieve her symptoms, and did not get to the root cause of the disease. “She got treatment, but it was just treating her symptoms…She had to move to Los Angeles to live with my parents because she needed so much help,” he had explained. 

There are multiple different types of scleroderma, with localized being the most common and more mild type. With localized scleroderma, the internal organs are rarely involved, and it primarily affects the skin. Systemic scleroderma is the less common type, affecting about 30% of patients living with the condition. This is the type that Bob Saget’s sister had, which impacts one’s connective tissues and internal organs.

Since scleroderma was a cause that was very dear to his heart, Bob Saget focused on raising funds for the Scleroderma Research Foundation, which aims to find a cure for this debilitating autoimmune disease. In total, he raised over $25 million for the foundation prior to his passing, leveraging his fame and Hollywood connections to garner donations from big-name celebrities like John Mayer, Rob Williams and Dave Chappelle.

“For me, it’s an homage to [my sister], and somehow telling her that her life had a real purpose,” Saget had said. He continued, “I have a lot to live up to. I feel like, to really do her justice, is to really make huge strides in the next decade or two and to really help these sweet, innocent victims with this disease.” 

In light of Bob Saget’s passing, his family members asked friends and fans to remember him by making a donation to charities benefitting patients with scleroderma. To make a donation in Bob Saget’s memory to the Scleroderma Research Foundation, see the official in memory webpage. Donations will be matched up to $1.5 million.

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