A rare condition kept Dan Buss in the shadows his entire life. But thanks to an investigational drug, he can now literally step into the sunlight.
Dan Buss lives with a rare condition called erythropoietic protoporphyria , which involves an extreme sensitivity to visible light.
"You can be in a patio that has a perfectly good covering, no direct sunlight, however, if there's a reflection coming off the fence, you're still getting pain.""Mum tells a story about her noticing that I was worse in the front of the car instead of the back of the car," he said.After months of seeing doctors, at the age of two a dermatologist diagnosed him with erythropoietic protoporphyria .
"The sun was shining, and me asking Mum: 'Why can't I go out and play with him?' And Mum explaining that's the way it is, you'll have to wait until later in the evening.""I missed out on those really good moments with friends that create memories," he said. Later, he married his wife Sandra; together they run a successful business, and have had a family of their own."Was I going to be somebody different? I felt like who I am now, I don't think I was meant to be that person."Then in 2022, a trial for a possible treatment was green-lit in Australia and would run in Sydney and Melbourne.
"I want to say to them, get ready, you've got a future. You are not going to live like you're living now. I promise you.""I've been looking after patients with this condition for 20 years and I've never seen something like this," Dr Ross said.The Australian trial is ongoing, and due to its success another has begun in the United States.
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