Hope for ULD
@hopeforuld.bsky.social
Hope for ULD is uniting patients, families, doctors, and researchers to fund research, treatment, and education for Unverricht-Lundborg Disease ( #ULD ), also known as #EPM1. Learn more here: https://www.hopeforuld.org/ #RareEpilepsy #genetherapy
The loss of dreams. The loss of abilities. The loss of freedom. The loss of a pain-free life. And because the disease is progressive, things get worse. This is why Hope for ULD exists.
November 23, 2025 at 10:00 PM
The loss of dreams. The loss of abilities. The loss of freedom. The loss of a pain-free life. And because the disease is progressive, things get worse. This is why Hope for ULD exists.
Usually patients eventually have trouble speaking. Their brains are not evenly affected by the disease. Bright and articulate thinkers suddenly have trouble verbalizing and can become confused. ULD affects people differently, but most patients and their families suffer trauma, grief, and loss.
November 23, 2025 at 9:59 PM
Usually patients eventually have trouble speaking. Their brains are not evenly affected by the disease. Bright and articulate thinkers suddenly have trouble verbalizing and can become confused. ULD affects people differently, but most patients and their families suffer trauma, grief, and loss.
They are hard to control. They can be relentless. They slowly change life. Eventually, they often take away the ability for patients to walk safely, causing MANY falls and injuries. Many patients end up needing to use wheelchairs. Once easy daily personal care tasks can become impossible...
November 23, 2025 at 9:50 PM
They are hard to control. They can be relentless. They slowly change life. Eventually, they often take away the ability for patients to walk safely, causing MANY falls and injuries. Many patients end up needing to use wheelchairs. Once easy daily personal care tasks can become impossible...