The HSP Support Group helps people diagnosed with Hereditary Spastic Paraplegia [also known as Familial Spastic Paraparesis]. It is a UK based Registered Charity and was started as a ‘self-help’ group in 1989 by Stephanie Wyatt to support her affected husband and son.
We now have over 300 members in the UK. We are trying to reach more people with the condition, this remains a problem due to the rarity of diagnoses.
What is HSP?
Hereditary Spastic Paraplegia is a diagnosis which covers a range of rare genetic disorders. People of all age groups can be affected. The main symptoms are stiffness (spasticity) and/or paralysis in the lower limbs. HSP causes degeneration of the upper motor neurons within the brain and spinal cord. Filaments (called axons) within the neurons relay messages to the limbs. The longest of these connect with the lower limbs and are affected more than those to the upper body. So most people with HSP do not notice symptoms in the hands or arms. For those with uncomplicated HSP, the condition has little or no effect on life expectancy.
What does the Group do?
A. Helps members and assists research.
The Group aims to encourage and support members and to assist research. We have recently provided grants to teams researching aspects of the condition and we regularly publish information about HSP and the Group to our members.
The Group provides various ways for members to keep up-to-date and communicate with each other:
An Annual General Meeting featuring lectures by HSP specialists.
Local Meetings are held twice a year in various locations.
Newsletters published to our members quarterly
A telephone and e-mail Help Line service offering advice and support to members.
Grants are provided to members to help with the purchase of mobility aids
Research Grants are provided in support of projects researching aspects of the condition
An e-mail discussion group system allows members to share information and experiences