Solving the HSP Puzzle

[@jeffwooten]

I have this disease. Some doctors around me in southern Missouri and some don't know anything about it. Thank you for the information

[@MsMOLLYKINS]

I have lupus predominant health issues and last yr told I have hsp. No one warns you or explains anything , my neurologist through his hands in the air and said there's nothing left to do. I am becoming wheelchair bound my legs feel like cement . I go to take a step and my feet feel like their stuck. I am about to start self catheterisation because I struggle to urinate and I really can't feel when I begin and end . I always feel like pressure down in that region but never busting to go. Anyway hope the research gives up more information we need it thanks from Sydney Australia

[@Monkofmagnesia]

I have what was called spastic diplegia, than idiopathic spastic diplegia, and, finally, just a couple of weeks ago, spastic paraplegia (after having my one and only genetic testing. I have been going to doctors since 1973). I have the Baclofen Pump, use a cane in each hand and a walker. I used to be able to run and even dance on stage (I had been inolved in community theatre since 1980). Now I have two leg braces as well. Every time I seem to be getting the walk back (via physical therapy) it becomes twice as worse as before. No one on either side of my family, living or dead has this. I no longer know where to go for answers.

[@mohammedkaleem2794]

Great Doctor.. I wish you good luck and be blessed in your research

[@rashidt7808]

Assalamu alaikum

[@rashidt7808]

Sir if you found any solution. I humbly request you that Please open talk to world. Have HSP

[@floor1077]

Me to! I have the feeling i cant live so long like this

[@vt68]

I'm very glad to see that there is progress being made. Where can I go to get more information on your work?

[@MontrealNeuro]

Hi. Sorry for the late replay we just saw this. You can learn more about the study here: www.mcgill.ca/neuro/HSP-gene-mutations

[@Organized-chaos1]

Any updates on a cure?

[@TheArtisticCat]

Will leg braces help with my walking?

[@il3mendo]

Doc I have have spg4. May I ask you how spastin and ketanin interacts with the atp ?

[@concrete3030]

Any updates?

[@peterscarfe4354]

My Dr Tells me that HSP does not worsen over time,but 15 years ago i could walk without a stick and now i cant balance or walk far i have to fall on to the walls in the house and i stopped leaving the house 10 years ago.im sure he is wrong as my condition is worsening.Is he right or Wrong about this ?

[@sourabhgoyal553]

Your doc is wrong situation worsens bcz I'm not able to walk I have same disease but atoq to my doc baclofen pump can be good option

[@SuperHigear]

Keep up the great work, Doc, we want to walk again...

[@ronnielott73]

YES WE DO!!! THANK YOU SO VERY MUCH!!

[@rashidt7808]

Currect we will walk normally

[@swapnilhelkar769]

@@rashidt7808 hello please share ur contact details... I hv also hsp

[@Trey_Alexander]

Guessing the research has just stopped?

[@tiktoksgoneviraltiktoksgon8731]

I had hsp at age 10 it went no I'm 11 it came back I also had a weell chair it's really painful I struggle to work

[@juliedesmaraistrepanier8077]

wow!!