Those with a diagnosis, their partners and those with an interest in the condition are welcome to join. Details and membership application forms are available on our "How to Join" page.
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.
- Regional Meetings are held twice a year in some of our regions.
- A 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
These conditions can be known as:
- Hereditary Spastic Paraplegia, Hereditary Spastic Paraparesis (HSP),
- Familial Spastic Paraplegia, Familial Spastic Paraparesis (FSP),
- Idiopathic Spastic Paraparesis or
- Strumpell-Lorraine Syndrome.
Genetic abnormalities reduce the levels of signals along the spinal cord. This causes slowly progressive stiffness (spasticity) and weakness of the lower limbs. The first symptoms for most people are stiffness and weakness of the legs possibly followed years later by a scissoring spastic gait. As a result of this spasticity, HSP affected people expend a much greater level of effort than an able bodied person in walking. Bladder problems and fatigue are often associated with the condition.
The severity of the effects of HSP varies from patient to patient. Where one patient may experience early onset HSP, but manage to walk unaided for the rest of their life, another patient may require the use of a wheelchair within a few years of onset.
Whilst there is no cure for HSP, there are a range of treatments which many patients find beneficial. Further reading via our Links page...