Individual Submission – Angela Pressley
I am a carer
We need a better understanding and acknowledgement of rare diseases that don’t tick all the boxes when applying for carers allowances or payments, my daughters disease is more severe and life threatening for example than juvenile arthritis (which is listed for carers payments) but is not listed and over the past 8 and a half years of her illness for only half of those have I had carers allowance and a health care card to help me out.
My daughter suffers from juvenile dermatomyositis which effects only 1 child in every million! So perhaps somehow making it easier for people with rare diseases could be helpful. Instead of us having to fight for it.