My MP is going to ask parliament to debate our situation/condition after the Eater break, on his own he is unlikely to succeed so if you want the government/health dept to do something to prevent others going though what you have please e-mail your MP today.
Tell them the name of this condition. That it is the worlds most painful incurable one and as much of your story as you are comfortable with, at the very least tell them how long and how many doctors before you were diagnosed. That 95% of the NHS have never heard of this condition but according to figures in a paper published by the Royal College of Physicians last May there maybe 480,000 sufferers on the UK and less than 20,000 have been diagnosed
Ask them to read these links and spare 5 mins to watch the video.
Tell them that Iain Stewart is going to call for a debate on this after Easter and ask, beg , plead whatever you feel is appropriate that they contact him ASAP to offer their support in anyway they can.
Please don’t think I’ll do it later do it right now.