‘Knowing I cannot get the drug is unbearable’
WHEN Paul Jupp was growing up he would tire easily, he struggled to walk long distances and his legs would sometimes collapse underneath him.
His mother Sheena Burton said: “I knew there was something wrong, but it was years before they picked up what it was.”
Paul was 14 when doctors diagnosed him with having Pompe disease, a rare muscle-wasting condition.
The impact on the muscles in his face has made it difficult for him to talk and he stops breathing in his sleep. Ms Burton says her biggest fear is that one day he will not wake up.
Last year, she suffered another blow when her oldest son Phillip and her daughter Michelle both tested positive for Pompe disease.
She has spoken to other sufferers who say their symptoms have improved after being prescribed Myozyme, but the treatment is not available in Scotland.
She said: “I find it so frustrating that there is no support for them here in Scotland. Knowing that there is a drug that can halt this disease and that it is not available to patients here, I find unbearable.”
Similar Posts:
- Michelle Wood-Seng on ABC’s Take The Money & RUn
- Revolutionary treatment transforms mother’s life
- Swine flu drug is linked with sleep disorder
- Two more deaths in infection outbreak
- GPs urged to send patients for HIV tests as Scots figures rise
