Ms Connolly started to suffer numbness in her own lower body, weight loss and poor appetite 4 years ago. Doctors initially thought she’d ms however this was eliminated after tests. Eventually, Degos disease was diagnosed.
Degos is really a disease from the bloodstream vessels by which cells within the linings from the walls from the small veins and arterial blood vessels underneath the skin swell once they become inflamed. This will cause restricted bloodstream flow. In some instances, bloodstream vessels within the gut, nervous system or eyes may take a hit, and lesions on the skin appear.
Mr Harris has stated existing plans for that provision of Soliris don’t enable the drug for use to treat an ailment “beyond the the marketing authorisation where proof of clinical benefit is not demonstrated”.
He’s undertaking the 84km march after neglecting to make progress inside a two-year campaign to permit his wife be treated with an experimental basis with eculizumab, that is licensed in Ireland to treat other bloodstream illnesses.
Declan Connolly, whose wife Charlotte now is alone in Ireland having a rare circulation system condition referred to as Degos disease, leaves the Co Westmeath town on Monday and wishes to achieve Leinster House at 4pm on Tuesday.
A Mullingar man would be to walk from his the place to find Leinster House now in protest in the refusal from the Government and also the HSE to deal with his wife and among the world’s most costly drugs.
Soliris isn’t licensed for the treatment of Degos disease but such off-licence utilization of a medication isn’t unknown, when approved by doctors treating the individual.
Soliris, that amounted to as much as €430,000 per patient yearly, was approved at that time minister for health Leo Varadkar and also the HSE in 2015 to deal with patients with two unrelated bloodstream illnesses. It was regardless of the HSE saying the price was exorbitant and Mr Varadkar accusing the maker, Alexion Pharmaceuticals, of aggressive prices.