My sister's story - SPG5A - Spastic Paraplegia

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Seeking Support and Hope for My Sister with SPG5A ❤️

Hello everyone,

My sister is 23 years old. She was diagnosed with SPG5A (Hereditary Spastic Paraplegia Type 5A) at the age of 6.

My sister has been living with this condition for many years, and we are searching for more information, support, and hope for her future.

Recently, she has been experiencing intermittent jaw stiffness, along with neck and back stiffness. She also underwent gallbladder removal surgery two months ago, and we are seeking medical guidance regarding these new symptoms.

I would like to connect with other individuals or families worldwide who are living with SPG5A, as well as researchers and doctors working on this condition.

I would be grateful if anyone could share information about:

- Other people living with SPG5A and their experiences.
- Current clinical trials or promising treatments specifically for SPG5A.
- Research into CYP7B1 gene therapy or other potential treatment options.
- Doctors, hospitals, or research institutions we could contact.

If you or someone in your family has SPG5A, please reach out or share any helpful resources. Connecting with others who understand this rare condition would mean a great deal to our family.

We are holding on to hope for better treatments and a brighter future for everyone affected by SPG5A. ❤️

Thank you for reading and for any support or guidance you can offer.