I have two consultants, a Rheumatologist and a Respiratory Physician because I have Mixed Connective tissue disease with Interstitial Lung disease and all the other signs and symptoms that goes with lupus.
My consultants have tried four times for the funding for Rituximab but each time we have been told no. My lungs are getting worst and I have to use oxygen. I have been given every drug that's been given for lupus but unfortunately they have not worked for me.
I feel my only hope of getting this drug is to beg the money to pay as I am too ill to do any fund raising (if anyone knows of any charity that I could contact for help I would be very grateful).
If I cannot get this money from the IRF I will have to go TO my local MP and to the press but I really don't want to do this as I feel I would be blackmailing the (IFR) The Individual Funding Team into giving the funds for the drug. The IRF are saying my situation or disease is not rare and therefore doesn't deserve the opportunity to try this drug.
Sorry for the rant but I do feel I deserve the chance to try this drug. I was a nurse who worked for the NHS since I left school.