Hello there! I think I'm still reeling from shock reading about MWS and FCAS. I can tick every box, as can my 60yo father, 30yo brother my sister and (unfortunately) my 1yo daughter. We have ALL been diagnosed with several chronic conditions and every time we are in the 'almost but not quite' category. So far it's been Thalassemia, PCOS, hereditary early onset hearing loss, non specific allergies etc etc. ALL of these have been treated as separate conditions and no-one's ever connected them together. My brother was finally referred to a Haemotologist for the anemia (NOBODY is convinced by the Thalassemia diagnosis especially as we all test negative for it). He laid out every single one of our issues - the cold sensitivity, the nausea, the hives, the anemia and the hearing loss and the haemotologist has thrown out the idea of it possibly being MWS and FCAS. We can tick all the boxes. The deafness that starts in our teenage years, the hives and blood shot eyes, the nausea and aches associated with cold. We've all joked about being allergic to air-conditioning.. I have NEVER thought the the hives could be connected to our hearing loss. To be honest it's never really affected our lives that much. We've lived with it and use hearing aids, anti-histamines, pain-killers and rugged up and put the heater on to 'sweat it out' when we're feeling 'crook'. Anyway, the fact that all these issues may be linked is very amazing news to us. I'm going to take my daughter to our GP next Friday to ask more about this. I trust my GP but how do I make sure I'm taken seriously on this (sorry but been fobbed off with unsatisfactory answers all my life)? Also who do I ask for a referral too? I guess her pediatrician is a first point of call and my brother is going to a haematologist, but is there a speciality that would be best to start with for myself? My brother's haematologist is going to look into getting some DNA investigation done and checking his kidney function. Is there anything else to check or ask? Also, bit of a long shot but we're all in Australia. My brother, sister and father in Western Australia and my daughter and I live in Sydney. Has anyone ever heard of anyone from Australia that knows anything about this?

I see 2 different Rheumatologists..I would start there, they are who diagnosed me. I know there is also a genetic test via blood. I live in the US, so as far as Australia goes, I'm really of no help. Hope you get things figured out!! Good Luck!!

Dear Karen 10, I know that there are 3 people that are known in Australia with CAPS, and I know one family very well that has a son with NOMID/CINCA, the more severe kind of CAPS, but he is doing very well now that he is on the proper medications. I am the president and founder of The NOMID Alliance, and my middle son has a moderate form of NOMID, If you would like to connect with them, they post on the yahoo group called nomidsyndrome and would be very helpful. Please go to our website: www.nomidalliance.net to read more detail about these conditions, and the wonderful new medication treatments that are changing lives. Also, you can download a booklet to take with you to your doctor on the site under CAPS guidebook, and there is a helpful chart in the center with all the common and not-so-common symptoms with MWS< FCAS and NOMID as compared to other autoinflammatory diseases. The link for the pdf download is: http://www.nomidalliance.net/downloads/finalCAPSbrochure_web.pdf Feel free to contact me directly as well, as we work to help lots of new patients and their families understand these diseases, options for treatment and also get connected with others. You all have gone through so much, but if you do not want your daughter to have to endure the hearing loss and such, the medications work well to stop the symptoms, inflammation and progression of such permanent symptoms. By the way, you are right that the eye redness, anemia, hearing loss are ALL part of this condition! The drugs work very well, and you could feel better and symptom free within a day of starting them. They are all injections, but so worth it. I have helped a lot of people that have not been diagnosed until they were in their 40s to 50s even, and they have never known what "Normal" felt like until they started these medications. Some have been through so much that they were not sure that they could go on living with this disease much longer, but now that they have been diagnosed and on treatment, it is like they have a whole new life. Please contact me, and I hope you can connect with this family that I know in Australia soon. Karen

Hi Karen 10 my name is Louise and my son is the child with Nomid in Australia thta Karen mentioned. We live in the Ilawarra and see a wonderful dr at syd childrens hospital. Let me know if you would like his details. Where in sydney are you? We also lived in WA for 2 years before kids. Louise

Thank you for the replies everyone. Louise I think I found an email address on yahoo and sent an email. Let me know if you don't get it. Karen, thanks for the long post. I've downloaded the booklet to take to the GP on Friday and will be in touch shortly.

i've replied to your email Karen10 cheers Louise