Although I was diagnosed with SLE 6 years ago nobody ever told me about Lupus UK and there was no literature about it at my GP surgery or the rheumatology dept at the hospital. There is now, because I have placed literature and posters I requested from Lupus UK in both venues myself!
I only stumbled across Lupus UK early this year when Googling some symptoms I was having. I then followed the Forum before joining last month. Since then I have learned SO much about the condition generally and my own symptoms specifically from others and from links provided on this site and wish I’d had this support 6 years ago! It would have saved so much heart-ache to share my feelings and anxieties in the early days with those who know and who would have offered reassurance, advice and invaluable support! I would also have felt less like a hypochondriac knowing that a lot of the symptoms I experienced, often one straight after another, were also experienced by others and that their feelings, worries and anxieties were similar to mine. I was not alone but I didn’t know that then! So thanks to all of you and thanks to Lupus UK for providing this forum and all the information they make available to us.
But how and when did you all find out about Lupus UK and this forum? Did anybody else stumble across it and waste years you could have been benefitting from the community? I’d love to know if it has only been me missing out for so long. Love and hugs, Spotty