A study is being carried out at Sheffield University. They are looking how care can be made better for young people and parents / carers who are living with Hereditary Spastic Paraplegia/Paraparesis (HSP).
They are seeking people who are 13-25 years of age with HSP, or a parent / carer of a young person with HSP. Their study seeks to:
- hear what living with HSP is like when you are young,
- understand how to improve health care.
They will ask you questions as an interview, which will take about 1 hour. If you are interested in this study please drop us a line so we can pass on your details.
Hi my name is Marc. I am a key worker for a young man with hsp 11 we live in Devon. He has matrix to help walking and light physio but no more . Are there people in Devon that we can reach out to with the same condition.
Hi Marc, take a regular look at the meetings page to see if there any meetings in your area – some are face-to-face, some on Zoom https://hspgroup.org/hsp-support-group-events/ most events are open to non-members of the HSP Support Group. If you are on Facebook it could be worth joining this group: https://www.facebook.com/groups/19469684343/ And of course you can find out more on HSP Support Group membership at https://hspgroup.org/join-hsp-group/