Hi All.I was diagnosed recently (end of Jan. 2018) with SCLS .I would love to make contact with someone in Ireland with this very rare condition as I am trying to find an Immunologist here who is familiar with this syndrome .I felt very isolated until I came across this wonderful site ! I find it so informative and helpful .Thank you everybody !Only for you I would still be in 'free fall'!  I am on no medication to date but have read with interest the various meds etc people are on .I wish you all good health .

I am probably the closest to you - I live just south of London.  IVIG is the best treatment which you should investigate.