HSP is an incurable disease that affects both the brain and the spinal cord. People with HSP gradually have more difficulty walking and often eventually need a wheelchair. Problems can also occur with arm coordination, bladder control, speech, swallowing, vision, hearing, and memory. Foundation Life4HSP wants a treatment to make a treatment possible and improve the quality of life for everyone who suffers from HSP.
Around 5,000 people in England
Hereditary spastic paraplegia, or HSP for short, is a rare inherited disease affecting key connections between the brain and spinal cord. HSP causes stiffness and spasticity in the legs in almost everyone. It starts mildly but gradually worsens. As a result, standing and walking become increasingly difficult.
Between 3 and 10 out of every 100,000 people are born with HSP. That may seem like a small number, but in the Netherlands alone, that’s more than 1,000 people. Worldwide, it could be as many as 800,000.
What if you have HSP?
- For people with HSP, standing and walking become increasingly difficult. Some use crutches; others eventually need a wheelchair. In the worst case, they become bedridden.
- People with HSP may also suffer from pain and fatigue, sensory disorders, and sleep problems. But also from issues with their balance, bladder, and bowels.
- There are also forms of HSP where you experience memory problems, attention disorders, or difficulties with seeing, hearing, or speaking. In this form of HSP, epilepsy and depression are also possible.
is needed this year for research into a treatment and a better life for people with HSP.
we have already raised!
(total amount donations, campaigns, gifts)
Every donation goes directly to research.
What you can do
HSP has a major impact on the lives of patients and their families. Foundation Life4HSP wants to make a treatment possible and improve the quality of life for everyone suffering from HSP.
Organize an event
Start an event and ask family, friends, and acquaintances to support you.
Incurably ill
At this moment, HSP is incurable. There are treatments, but they focus on relieving the symptoms. For example, there are medications to reduce spasticity. Injections with botulinum toxin in the legs can also help to lessen the symptoms.
Because standing and walking become increasingly difficult, people with HSP often use aids for this. For example, orthopedic shoes, ankle braces, walking crutches, or a walker. Eventually, some become dependent on a wheelchair.
Patient contact
When someone is diagnosed with HSP, there is often still a lot of uncertainty. Do you have specific questions or need support? Our Patient Contact department will be happy to help you. Send an email to patientencontact@life4hsp.com.
Would you like to know more about HSP? You can find detailed information about hereditary spastic paraplegia on the website of Muscle Diseases Netherlands.
Our ambassadors
Hans Klok
The World’s Fastest Illusionist
De bekende Nederlandse meesterillusionist Hans Klok die wereldwijd volle zalen trekt, zet zich in als ambassadeur voor Life4HSP.
"Together we will make HSP disappear."
Nouchka Fontijn
Boxing champion
Won two Olympic medals and several European championships, now she saves her punches for HSP.
"Fight along against HSP!"
News
Er is hoopvol nieuws voor mensen met HSP: de Amerikaanse gezondheidsautoriteit FDA heeft toestemming gegeven voor
Research
Starting in March 2025, Euro-HSP, together with Life4HSP, began supporting a new research project.
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