I was awarded enhanced PIP for living and enhanced PIP for mobility in 2023 after going to PIP tribunal. I had been fighting for 35: years for disability benefits after our GP told us to in those days it was DLA. I was born disabled which got severe when I was 29 our children 4 years and son 6 months old. Did have my diagnosis of what it was until I was 63 and only because my neurologist had my whole genome genetically tested. First patient at this top neurological hospital to have it my neurologist had to research it . The rare disease society put me in touch with Facebook group started by a Brit nearly 20;years ago it's worldwide and just overv1,100 of us there. Plus in when I was 62 had it confirmed after having MRI I was also born with hole in the side of my heart it's small and on medication for it.
Only took me moving over 100 miles to get a GP practice that cared to send me to see my neurologist and cardiologist. Had neurologist where I used to live but he didn't care . I had limb jerks for 32 years even in my sleep and 4 bad seizures.. My new neurologist gave me a tablet and within 2 weeks my limbs where still.
I have visible and invisible disabilities.
Unfortunately since last year my health has deteriorated. But still fighting on to live a full life.
Heatwave Hits, songs to sweat to!
I miss the woman my daughter was before she lost her husband
