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Which advice would you give to someone who has just been diagnosed with Hereditary Spastic Paraplegia?
See some advice from people with experience in Hereditary Spastic Paraplegia to people who have just been diagnosed with Hereditary Spastic Paraplegia
To prepare for the future by strengthening as much as you can. Not to be worried if you need to use a wheelchair as to me it has given me more freedom.
Posted Mar 1, 2017 by Patricia 1000
Take each day as it comes. You will have good and bad days but stay strong
Posted Nov 9, 2017 by Leigh 1850
When you first are diagnosed with HSP and see the prognosis of your future limitations, the feeling can be very daunting and due to the rarity of the disease one can feel very unfairly persecuted and alone. I think it is helpful to know that 1 in 10 Americans are faced with a rare disease and many, if not most are worse than HSP in terms of both physical limitations and mortality. There are many modern tools that can compensate for the limitations of HSP and there are places to go on the internet to learn about them and learn from others who have HSP about how to cope.
Posted Mar 19, 2018 by Franc1s77 3550
When you're ready, start talking about it.
Posted May 10, 2018 by Evan 1620
Now is the time to panic, why wait?
Posted Mar 13, 2019 by Craig 3550
