My Story

My beautiful mummy lost her fight from Amyloidosis on 27/11/2019. We as a family got her diagnosis 12 weeks before she died.

We hadn’t even heard of this illness before hand, shortly after mummy’s death I started to feel unwell it started with really sore buttocks to the point I thought something wrong with my couch so I replaced it but nothing changed.

Then diarrhoea & constipation, felt like a haze or fog had come over me, was 51 & was always active walking & taking big strides but everything changed… I was walking like an old woman really slow, I had no energy, going upstairs on my hands & knees, out of breath, walking across the room holding onto furniture & door frames because my balance was so poor.
I was admitted to hospital & told my heart was working twice as hard as it should have being, burning hands & feet, swollen tongue, hands, legs & feet, really tired but can’t sleep, waking up every hour, have no quality of life.
I meet a friend I hadn’t seen in a while & she was taking aback by how my appearance had changed so much

I meet a friend I hadn’t seen in a while & she was taking aback by how my appearance had changed so much.

I can’t explain myself some days, I know in my head what I want to say but can’t find the words to say it. I’m constantly in pain from the base of my scull right across my shoulders & the bottom of my spine, my arms & legs fell like tree trunks so heavy.
I’ve been feeling so unwell from 2019 & feel like I’ve been banging my head off a brick wall talking to my doctor, changed my doctor & told him I felt like no one in the surgery was listening to me & he listened, he has referred me to royal free hospital in London.
I am so thankful to him as my mother attended the same surgery & for 20 years she knew something wasn’t right with her health, my gp told me mummy had cerebral amyloid angiopathy & proceeded to tell me this wasn’t the same as Amyloidosis. I’ve been talking to different Doctors & Nurses that have never heard tell of this illness, we as a family are the same but not medical trained so we have an excuse but not the medical profession.

I really hope my children & grandchildren have a better experience to diagnosis than I have or centenary better than my beautiful mummy had, wishing all who have this awful illness.
The very best Xx

My story – Grania – IRELAND (Republic)