Hereditary Spastic Paraplegia (HSP) is a rare disease, which can make it difficult to find doctors or specialists with specific expertise for its treatment. There are over 90 types of HSP, and because every case is unique, the condition affects each person differently—even among individuals with the same gene type (such as SPG4).  

This site is intended to open the door to options for people with uncomplicated HSP, or spasticity that primarily affects the legs. It was created by someone living with HSP who is not a medical professional. Rather, it is meant to serve as a starting point of options for those new to the disease—or as a helpful guide for others.  

While we continue to wait for a cure and for treatments that may slow or stop disease progression, this website offers a curated collection of resources drawn from lived experience, clinical insight, and products supported by scientific evidence that may help manage HSP symptoms.  Recently, Dr. Bass said, "What we need is a flexible therapeutic regimen or a combination of therapies."  This website provides a wide combination of devices and procedures to choose from to enhance mobility and/or lessen spasticity when used with therapy.  Approaching the disease with flexibility is important because this is a degenerative disease.  If we try one thing and after two years it stops working, we don't need to give up.  Being flexible to reassess abilities and try something else may help us to adapt to changes as they come.   It is important for me to have options in my journey.  I want to keep doing as much as I can for as long as I can.   Beneficial experiences will be shared here with you, so that you may make more informed decisions and help sustain resilience.

Please consult your doctor or healthcare provider for professional medical advice before trying any of the products or approaches discussed here.

“I must be open-minded and treat my beliefs as hypotheses to be constantly tested and subject to modification by better data.”
—Edward Hess, University of Virginia Professor Emeritus