Looking for something?

Find it in our extensive resource library!

Smart Filters

  • Reset
  • Services

  • Who it's for

  • What it’s about

  • Format

View: 177

Download: 1

Hereditary spastic paraplegia (HSP) for teenagers

Hereditary spastic paraplegia (HSP) is a general term for a group of rare inherited disorders that cause weakness and stiffness in the leg muscles. Estimates range from 1 in 11,000 people to 1 in 77,000 people. Symptoms will vary from person to person.

What does HSP look like?

Symptoms usually weakness in the legs and involuntary spasms and muscle stiffness (spasticity). There may be other symptoms in addition to the muscle weakness and spasticity, such as:

  • a gradual weakness in the legs
  • increased muscle tone and stiffness (spasticity)
  • problems peeing, such as an urgent need to pee, even when the bladder is not full
  • sometimes a lack of sensation in the feet

Children may develop leg stiffness and problems walking, such as stumbling and tripping, particularly on uneven ground. Some people may eventually need to use a walking aid or a wheelchair to help them get around. Others may not need to use any type of mobility equipment.

What about my independence?

When we are younger, it is fine and acceptable for our parents or carers to look after us in every way possible in our daily lives. As we get older it is expected by others, that we should be doing more of these things independently and not rely on other people to do them for us.

You might come into contact with an occupational therapist. They can give advice and come up with practical solutions to help you with independent living, making activities easier to achieve. You can ask to be referred to an occupational therapist through your medical consultant or through other therapists such as a physiotherapist whom you might be seeing.

Things I can work on?

Looking after your physical health is important to maintain your strength and abilities. The neuromuscular physiotherapist supports the multi-disciplinary team to review these and help to work with you and any other therapists involved in your care to support you. This will include:

  • improving your functional ability
  • managing any tightness of your muscles
  • exercises

These exercises may involve stretching and strengthening of the lower limbs, cardiovascular (heart and lungs) as part of your daily routine and activities.

What about joining in with activities?

Sometimes you might feel you are very different from your friends. You might find that physically joining in with them is just a bit too hard for you to do. You do not want to miss out and not feel part of group, but have you thought about all the different ways you can join in? What about going swimming and having fun in the pool with everyone, how about joining in with other sports and pastimes?

How do I talk to someone about HSP?

Sometimes however much we get on with our family, it can be helpful if we could talk with a friend or someone who is not a family member. It might be so that we can get a better understanding of HSP, or perhaps share with someone how we are feeling, particularly if things are getting us down and we cannot work through it by ourselves. At the end of this resource we have included some resources and support organisations which you might find helpful to contact.

Contact us

Neuromuscular Service at Sheffield Children’s NHS Foundation Trust: Sheffield.muscle@nhs.net

Neuromuscular Therapy Service: scn-tr.sheffield.nmtherapy@nhs.net

Further resources

Kooth is commissioned by the NHS, Local Authorities, charities and businesses, to provide anonymous and personalised mental health support for children and young people. It is for people from the ages of 11 to 21 years (in Sheffield). In some areas of the country, the organisation is commissioned for young people up to the age of 25 years.

AskSARA for advice, support and products that make daily living easier. AskSARA is an award-winning online self-help guide providing expert advice and information on products and equipment for older and disabled people.

HSP Group offer information and support helps improve the quality of life for those affected by HSP. Their friendly support community helps with sharing ideas and reducing feelings of isolation. They support research into HSP, including developing treatments and improving understanding.

MoveMore Sheffield an organisation which provides information on local sports clubs and leisure facilities in Sheffield, to help disabled people of all ages and ability levels to find out where activity sessions are being held if they wish to take part in sport and physical activity.

Is something missing from this resource that you think should be included? Please let us know

Contact us

Disclaimer

Please note: this is a generic information sheet relating to care at Sheffield Children’s NHS FT. These details may not reflect treatment at other hospitals. This information is not intended as a substitute for professional medical care. Always follow your healthcare professionals’ instructions. If this resource relates to medicines, please read it alongside the medicine manufacturer’s patient information leaflet. If this information has been translated into another language from English, efforts have been made to maintain accuracy, but there may still be some translation errors. If you are unsure about any of the guidance in this resource or have specific questions about how it relates to your child, always ask your healthcare professional for further advice.

How useful did you find this resource?*

NHS

Western Bank
Sheffield
S10 2TH

United Kingdom

Switchboard: 0114 271 7000

Interesting Facts


We’ve got a special MRI scanner just for teddies so children can see what it’s like before they have a scan.

Help to transform our extraordinary hospital into something even better.

@

By continuing to use the site, you agree to the use of cookies. more information

The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.

Close