Providing help and support for those with
Hereditary or Familial Spastic Paraplegia

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Welcome to the HSP / FSP Support Group (UK)
ImageThe HSP/FSP Support Group helps people diagnosed with Hereditary Spastic Paraplegia [also known as Familial Spastic Paraparesis (FSP)].  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 / FSP?   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 corticospinal tracts within the spinal cord. The longest fibres, which supply the lower limbs, are affected more than those to the upper body. So most people with HSP do not have symptoms in the hands or arms. For those with uncomplicated HSP, the condition has little or no effect on life expectancy. Read more...
 
Q. 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 FSP/HSP specialists.
  • Regional meetings are held twice a year in some of our regions.
  • A newsletter published to our members quarterly
  • A telephone and e-mail help-line offering advice and support to members.
  • A library of information articles on HSP.
  • An Information Booklet is published to members containing a synopsis of helpful items.
  • Grants are provided to members to help with the purchase of mobility aids
  • An e-mail discussion group system allows members to share information and experiences
 

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