A man with a rare disease has revealed his daily struggles as he fights to change the law for people like him before he succumbs to the symptoms.
Shane DiGiovanna is just 27 years old and has only ever known the life of living with a condition called ‘Butterfly Syndrome’.
The Cincinnati-native was born with a disease that only 25,000 to 50,000 Americans suffer with, per Stanford Medicine, but is known as the ‘worst disease you’ve never heard of’ because of the way it impacts a person’s body, and quality of life.
For Shane, it has meant he knows the pain points of others suffering from the syndrome, which also includes the financial burden of medical equipment.
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With less than a year left to live, according to his doctors, Shane is trying to change US legislation to make medical dressings and bandages free to people who also have epidermolysis bullosa (EB).
It’s likely you’ve never heard of EB, like most people, but it’s a terrible disease that causes blisters and painful legions on the skin.
Its likeness to butterflies comes from the fact that it makes a person’s skin just as fragile as that of a butterfly’s wings, meaning the skin needs to be wrapped and kept free of bacteria for fear of introducing dangerous bacteria to the wounds.
“This condition is often called the worst disease you’ve never heard of,” Shane told Local 12 WKRC. He also explained to People the full impact of his condition.
“I’ve lived my entire life with epidermolysis bullosa … Every day requires intensive wound care just to prevent infection, manage pain, and keep my body functioning. The bandages that make that possible aren’t optional — they’re the difference between life and death.”
According to the National Institute of Health, people with EB can lack fingernails, have roughened skin, grow slowly, have poor tooth enamel and so much more as the EB attacks the skin.
Shane was also born without skin on his left leg, because EB prohibits the proper formation of skin due to a lack of critical proteins to bind it together, per EB Research.
The 27-year-old has now taken his story to Rep. Greg Landsman, who will introduce a bill to attempt to provide financial relief for EB families and cover bandages in their Medicare insurance.
Shane went on to allege that he is ‘very old for a person with severe EB’, and took to Facebook to reveal he entered hospice care in September 2025 due to the ongoing health complications stemming from the condition.
According to EB Research, the average life expectancy for those with the disease ranges anywhere from infancy to 30 years old.
Shane added of his struggles: “One of the new challenges has been inflammation effectively attacking my internal organs. Over the past year, my kidney function has steadily declined — and in the past few months, it has dropped off a cliff.”
“The doctors say I have somewhere between three months and a year left to live,” he went on to say, before revealing his mission to help others.
Now known as the Shane DiGiovanna Act, Shane's legislation means the Department of Health and Human Services (HHS) would need to look into whether covering bandages would prevent as many hospitals visits.
“This bill … asks a simple question: What happens if we treat wound care for EB patients not as a luxury, but as essential medical care?” Shane said in a statement to the outlet. “Because we already know the answer. When patients have what they need, they stay out of the hospital. They suffer less. They live longer, fuller lives.”
Per Local 12, he said the study is a required step before Congress can consider the bill, adding: “But the study is going to show that if you pay for these bandages to be covered, these kids are going to not be hospitalized as often. Their health care costs are going to be lower in the long run than they would be.”
Britt Jones