Reply To: LGMD 2I (FKRP)
I have LGMD as does my brother, and also to a milder extent than my brother and I a sister also has it.
I was diagnosed with LGMD at around 18 years ago (I am now 56), I noticed things weren’t right since my late twenties.
I have not received a total full diagnosis, even through the Genome Project sadly. I’ve just about stopped walking almost entirely now, too wobbly, too dangerous. Getting slowly used to being in a wheelchair and looking forward to having a powered chair soon as I am rubbish at self propelling! Will be moving into a bungalow in about 10-12 months.
My main advice is keep walking and clambering upstairs for as long as you possibly can safely. You’ll know when the time comes to move onto a wheelchair or whatever, the fitter you stay the longer you will walk OK for.
I wish you all the best ‘Pips’.
Mark.
"Stairs? Yes we have stairs, but there's only three" :-/