Hello everyone I have joined this to try get info to help my nephew who has this disease mostly in his kidneys but we are told its hit the heart and lungs. Apparently we are told he is in the rare end of the disease being it started when he was only 25years old and its usually in older people around 45 and up, is this correct?. He is now 31.He was hospitalised back when he was 25 after weeks and weeks of different opinions as to what was wrong, 1 idiot dr even put his arm in a sling and said it had been injured or something also put him on anti inflamitrys thinking the soccer he played was making his knees and ankles ache and swell. On the night he got admitted to hospital his urine was like cocacola and we were told he was in renal failure. Usually they wouldve put him straight on dyalisis but the specialist wanted to try something first, so he was pumped with pred and cyclo and other things and he improoved day by day. Mind you he was super fit young man playing soccer and working out never smoked etc. He went into remission for about a year then it was back and he was on a different medication which put him in remission for 3 yrs, he is now back on cyclo and pred and whatever, at last count he said he was taking 11000mgs a week of everything. his creatin on admission was 160, after 1 month it was 156 now last week its 134 so a long long way to get it back to 5.6, also his protein was extreme, dont remeber levels but they are coming down. Last visit the doctor mentioned possibly trialling 1 other very dangerous drug if this cyclo dont work before possible dyalsis. Now, heres a question and excuse all the spelling errors in this post. Is he a candidate for a kidney transplant? would a new kidney put a stop to what is going on right now? at no point has the dr mention transplant? why? his father and and other blood related and non blood related with same blood group have offered to give up a kidney but so far not told the dr this. I cant see any info other then before a transplant the blood needs cleaning with dyalsis. Is a transplant a last resort and being he is so young they dont talk about it? or is the fact theres a huge waiting list and possibly noone in family will match?lastly is there any support groups in the South NSW Australia area, mostly for me and his mother to go and get help with lots of questions, oh and has anyone had success with certain diets, his dr tells him food has nothing to do with this but I am a big believer of we are what we eat.Sorry for the huge post thanks