VHL Alliance

Meet Darien from Pennsylvania, USA.

Voices of VHL and the VHL Alliance are proud to collaborate on the Faces of VHL series, sharing real stories from the global VHL community to connect and inspire.

Every VHL journey is unique, and Darien's is one of hope, resilience, and gratitude.

After learning she had VHL, Darien faced difficult decisions about starting a family. Through IVF with embryo testing, she welcomed healthy twin boys who won't have to face VHL. More than 20 years later, she continues to approach annual scans and bloodwork with a positive mindset, reminding herself that each challenge is "just a temporary speed bump."

Thank you, Darien, for sharing your story and inspiring our community. 💙

Voices of VHL is an affiliated partner of the VHL Alliance.

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💙 This story is shared through a collaboration between Voices of VHL and the VHL Alliance, highlighting the experiences, challenges, and resilience of individuals and families affected by Von Hippel-Lindau (VHL) disease.

Living with VHL has changed the way Rafael moves through the world, but it has never stopped him from pursuing life fully. 💙

After waking up one day with blurry vision, Rafael was diagnosed with VHL and later became visually impaired due to retinal detachments in both eyes. Over two years, he underwent eight eye surgeries while also navigating a pancreatic neuroendocrine tumor.

Through it all, Rafael continues to push forward with incredible determination. From completing a full-distance Ironman triathlon to competing in the Adaptive CrossFit Games and pursuing his degree in psychology at FIU, his story is one of resilience, discipline, and purpose.

Thank you, Rafael, for sharing your journey and reminding others that life beyond a diagnosis is still full of possibility.