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 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.