Diagnosed with Sturge-Weber syndrome, a rare disease affecting the small blood vessels in the face and brain, Nancy has always had to face the stares of others. “I was barely four months old when I had eye surgery,” says this resident of Boom, near Antwerp. She is pinning her hopes on a new treatment in Italy. To this end, her family has launched an online crowdfunding campaign.

Nancy De Roost, 56, has always faced stares, comments, and questions about her appearance. She has Sturge-Weber syndrome, a rare congenital vascular disorder affecting approximately one in 50,000 people. It is characterized by the presence of a hemangioma (port-wine stain) on the face.

“I was barely four months old when I had eye surgery. The operation went wrong,” she told Het Laatste Nieuws. Today, she is blind in one eye and has undergone numerous surgeries, in addition to laser treatments. “I try to cover the port-wine stain with makeup. But I also suffer from swelling due to benign tumors, particularly on my lips.”

“People stare at me in the street”

Despite her illness, Nancy worked for a long time and tries to lead an active life. After a burnout five years ago, she turned to volunteering at a local community center. She works there a few hours a week, helping with dishes and meals. “I do it with great pleasure. People appreciate me there.” She also participates in cold-water swimming at a club, where she says she has found a real sense of community.

However, daily life remains difficult. Every day, she has to face the stares of others. This is undoubtedly the hardest thing for her to bear. “People often stare at me or make comments in the street. It hurts. Sometimes, I tell myself I don't want to continue living like this. I understand that people are curious, but they should just come and ask me. I'm very sociable. These persistent stares hurt me.”

New treatment in Italy

Today, she has placed her hopes in an experimental treatment in Italy, based on bleomycin injections aimed at shrinking tumors. An American patient reportedly obtained encouraging results. “If my port-wine stain and swelling would even just decrease a little, I would be happy,” she confides.

The problem remains the cost: around 20,000 euros. A fundraising campaign has been launched by her family and friends, while Nancy herself is selling candy to finance her treatment. “Last weekend, I was still in Kontich, and in the meantime, I’ve already sold 108 kilos,” she says with a smile. “I hope to be able to go to Italy as soon as possible. Better now than tomorrow.”