26/03/2026
Most people will never see the pain she lives with every day. But Simone feels it constantly.
Simone is a 41-year-old woman from Baiertal, Germany who has spent her entire life living with Neurofibromatosis Type 1.
As a child, the signs seemed small. She had café au lait spots on her skin and a few small neurofibromas, symptoms many people with NF1 develop early in life. But over time the condition progressed.
Today, Simone lives with multiple tumors growing along her spine. These tumors are intertwined with spinal nerve tissue, which means chronic pain has become part of her daily reality.
Simple things many people take for granted can be difficult. The pain can flare suddenly. Concentration and organization can also be challenging because she also lives with ADHD.
Yet Simone refuses to let the condition define her entire life. Instead, she shares her story publicly so others can understand what NF1 really is.
Neurofibromatosis Type 1 affects about one in three thousand people worldwide. It is a genetic condition that causes tumors to grow along nerves throughout the body.
Some tumors appear on the skin, while others grow deep inside the body, including along the spine. For some people the symptoms are mild. For others, like Simone, the disease can cause severe pain, mobility problems, and long term health risks. There is currently no cure.
That is why Simone speaks openly about what life with NF1 actually looks like. She wants people to understand that the condition is not just about visible spots or bumps on the skin.
It can mean constant pain, repeated medical care, and a lifetime of uncertainty. But it can also mean resilience. By sharing her experience, Simone helps others with NF1 feel less alone and reminds the world that people living with chronic conditions are far more than their diagnosis.
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