Hereditary spastic paraplegia

H.S.P., familial spastic paraplegia (F.S.P.), Strümpell-Lorrain syndrome

What is hereditary spastic paraplegia?

Hereditary spastic paraplegia is the name given to a group of rare disorders that are characterised by weakness and stiffness in the leg muscles.

There are two forms of the condition: pure and complicated.

What causes hereditary spastic paraplegia?

Hereditary spastic paraplegia is inherited. Those with a pure form of the condition have usually inherited a faulty gene from one parent, and those with a complicated form of the condition have usually inherited a faulty gene from both parents.

The faulty gene causes the nerves in the spine that control muscle tone and movement in the lower body to deteriorate.

What are the symptoms of hereditary spastic paraplegia?

The symptoms of hereditary spastic paraplegia gradually get worse over time. The main symptoms of pure hereditary paraplegia are:

  • Gradual weakness of the legs.
  • Spasticity which is increased muscle tone and stiffness.
  • Problems with urination.
  • A lack of sensation in the feet may sometimes occur.

Those with complicated hereditary spastic paraplegia also experience additional symptoms which may include:

  • Peripheral neuropathy which involves damage to the nerves in the feet.
  • Epilepsy.
  • Ataxia which is problems with balance, coordination and speech.
  • Eye problems.
  • Dementia.
  • Problems with learning and development.
  • Ichthyosis which is thick, dry and fish-scale like skin.
  • Hearing loss.
  • Problems with breathing or swallowing.

Are you affected by Hereditary spastic paraplegia?

There are ways to treat HSP, such as physiotherapy and occupational therapy. Muscle relaxers can also be used, and surgery may occasionally be an option.

If you’re affected by hereditary spastic paraplegia, The Brain Charity can support you.

We are the only charity in the UK to be here for every one of the more than 600 different neurological conditions in existence. Individually, many are rare, but combined, they affect 1 in 6 people.

We provide practical help on all aspects of living with hereditary spastic paraplegia, emotional support such as counselling, phone befriending and group therapy and social activities to people with hereditary spastic paraplegia from all over the UK from our centre in Liverpool.

Looking to talk to someone?

Woman smiling, making eye contact and holding the hand of another woman to comfort her

Phone us

Contact The Brain Charity now

Our friendly Information & Advice Officers are here to help. We endeavour to respond to all enquiries within 10 working days.

0151 298 2999

Looking to talk to someone?

  • Please tell us which neurological condition you are affected by and what you need support with.

Caring for someone affected by Hereditary spastic paraplegia

As there are limited treatment options, a great way to care for your loved one is helping with mobility, and being a companion.

Make sure you look after yourself as much as you look after them. If you need any assistance, or just need a friendly chat, we have lovely counsellors who can take your call.

We support carers, friends and family too

Are you a carer for or relative of someone with hereditary spastic paraplegia? It’s just as important for you to look after your own physical and mental wellbeing too.

The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition, including hereditary spastic paraplegia, from anywhere in the UK.

We also run an additional carers advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.

You don’t need to be a formal or registered carer

We can help you even if you don’t view yourself as a formal carer or claim Carer’s Allowance. Find out some of the ways we support carers below.

Other resources

Written resources

The European Reference Network

The European Reference Network has developed a Patient Journey for Hereditary Spastic Paraplegias (HSPs).

This is an info-graphical overview that outlines patients’ needs in the care of their rare disease. View it here.

There is also an NHS Choices booklet available: Hereditary Spastic Paraplegia
Hereditary spastic paraplegia by NHS 2019

 

Support groups

HSP support group

Website: www.hspgroup.org

Helpline: 01702 218184

Support groups at The Brain Charity

Unfortunately, The Brain Charity is not aware of a support group currently running for this condition. Are you interested in setting one up, or do you already run one? Email activities@thebraincharity.org.uk to let us know.

Alternatively, you can check out our list of related support groups here.

Other charities

HSP support group

Website: www.hspgroup.org

Helpline: 01702 218184

Contact (charity for families with disabled children.)

Website: contact.org.uk