LEEDS newly-wed is begging the NHS to fund a vital medicine that would save her eyesight.
Samara Ullmann, 29, defied medical science as a child when she ‘grew out of’ juvenile arthritis doctors had earlier predicted would leave her in wheelchair.
But her health problems returned and she’s since been struck down with uveitis which has destroyed her vision.
This week she took her campaign to the House of Commons, to raise awareness of her and the 119 other people in the UK who suffer from an ultra-rare disease and who need the help of a very specific drug.
Samara, who runs a PR company and lives off Birchwood Hill, said: “Without these drugs the prognosis of my vision is bleak and it’s scary.”
“The effects of loosing my sight completely would be devastating. I would loose a lot of my independence and would struggle to do my job.
“If I’m honest I try not to think about it as the reality is frightening and fortunately for me and others like me there is still hope.”
The drug she needs is called Humira, and while those with Crohn’s disease and chronic psoriasis can get it on the NHS, the £10,000 medication isn’t currently prescribed for her condition.
Leeds North East MP Fabian Hamilton, who is campaigning on her behalf said it’s far more effective for the NHS to intervene now as it could save her sight and help her stay in work.
He said: “This is a really crucial situation for her.”
This week Samara attended a debate in the House of Commons tabled by Mr Hamilton which asked the Government’s Life Sciences Minister George Freeman to consider asking the NHS to prescribe Humira.
One of the country’s leading eye specialists at Calderdale Royal hospital in Halifax, Mr Teifi James, has recommended it for Samara – who is already blind in her left eye – however so far NHS England decided not to allow its prescription.
The 29-year-old, who got married to husband Ben last year, said: “The debate was encouraging but it’s the timing that’s the most concerning thing because once you’ve lost your sight, there’s no way of getting it back.”
Mr Freeman told the debate clinical experts at NHS England have considered Humira for patients with severe refractory uveitis but concluded there was insufficient evidence. However the organisation is awaiting more research.
Mr Freeman said: “I am aware that evidence is emerging on the use of these drugs on the treatment of uveitis in adults.”
He said when more evidence is available it will be taken into account when deciding which treatments should be made routinely available on the NHS.