Hi I am really struggling to get anyone to offer me treatment. My consultant in uk has hit a brick wall of red tape restrictions on the NHS.At present none of the conventional drug medication is working and I am on a permanent low grade flare just hovering on the edge of major flare. If anyone has any advice or contact info. Would be grateful. I can fund treatment or travel to get treatment, time is starting to seem very short. Apparently there is no blood available Wendy

Hi Wendy, as I live In Germany I cannot give you direct advice for UK or the NHS. But I also had difficulties finding a doctor who would help me. The following two things helped me, finding a doctor and contacts: Write also "UK" in the subject of your topic. Many of the people here are from US or elsewhere. Anyone from the UK could find you better. This is now important, and if you find help anyone who is looking for that much later could find you. Thus I found two other patients from Germany. Secondly, contact Prof. Amoura and Prof. Pecker from the "Disorder Details" section, and ask them for advice and if they know someone in the UK. Mark Pecker is very helpful and friendly. He knows a doctor in Germany, made contacts, and from him respectively at his hospital I get my IVIGs. I wish you the very best. Andreas

Hi I live in Italy and I always checking with Dott Amoura in Paris you can call this number to have appointment with his secretary madam Goulard Sophie Pechon Tel 0142 178001 / 0142 178022 sophie.goulard@aphp.fr Dr Zaher Amora. +33 1 42 17 80 81 This is all the contacts that I have Hope you the best Yaser

Hi Wendy Maybe Amsterdam is in your reach (by ferry or train), Dr kramer, prof of internal medicine at VUmc hospital could be able te help you. I can contact him, but I do not know how you can tackle the financial aspect in your health system. But their should be some doctors withe experience on SCLS in UK as well Hiltjo, The Netherlands.