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Hi All

JonC Message
5 Sep 2011, 11:53 AM

Hi All, I was writing to ask if there are any UK members here? I only know of my family that suffers with MWS and I have never spoken to anyone outside my family regarding MWS because I have never met anyone else!! I have been reading all the forums and such and just wondered if there are any UK members here?
Moss Message
26 Sep 2011, 11:27 AM

Hi, I have a version of caps similar to MWS so if you wish to contact me, please do. Alan
JonC Message
26 Sep 2011, 12:17 PM

Hi Alan Thanks for the reply.... what type of MWS do you have? What are your symptoms? are you on anything? I take 50mg anakinra daily for MWS .. this is excellent at keeping my symptoms at bay. A wonderdrug!! I hear also they are using anakinra to treat people with asbestosis as well.... Regards Jon
Moss Message
26 Sep 2011, 09:45 PM

Hi Jon I was diagnosed last January with Caps. At first they thought I had MWS but after a couple of weeks of extensive testing as an in patient, they decided I had what they call a bizarre variant caps which does not fit MWS. I had symptoms such as fever/chills, hives, joint pains, headaches, vision problems, total loss of both inner ear balance and sudden on set deafness totally in one ear and partially on the other. Further tests revealed brain swelling, aseptic meningitis , bone weakness , heart problems and memory,/ reasoning and concentration problems. I started on anakinrin daily but April of 10 I moved onto 300 mil of Canakinumab injected bi monthly at hospital and it has controlled the level of saa serum released and working with a number of specialists, they have managed to stabilise and in some cases improve the various symptoms. The Royal Free in Hampstead London is fantastic at treating. Please feel free to contact me directly on walan1@ Alan
Craig84 Message
2 Oct 2011, 10:08 AM

Hi , i was diagnosed with MWS in 2008 i am the only one in my family that has it and dont no anyone else with it, i am on the 8 week injections witch i go to the Amaloid centre at the Royal Free hospital in london for , i have found it to be a great help .
Mitch Message
3 Oct 2011, 09:50 AM

Hi All, First post here. My name is Mitch and my 6 year old son has been diagnosed with caps. He is also receiving canakinumab at great ormond street which has changed his life greatly. I have recently found out that i am the carrier and he got it from me, which i could not believe as i have never had any signs of this whatsoever. (im 39) Here's hoping you are all well.
stopcaidnow Message
3 Oct 2011, 01:48 PM

I am so glad you have found one another on this site. I am the President/Founder for StopCAIDnow, which is the first 501c3 Organization to cover all Childhood AutoInflammatory Diseases. In the eleven months we have worked very hard to make a difference at every level. We are working on some big projects. This week we are announcing some great news, that will help all with CAID! Sincerely, Lisa
nomidalliance Message
25 Oct 2011, 08:24 PM

Dear Mitch, Thanks for finding this site! I am very glad to hear that your son is responding well to the canakinumab. GOSH is a wonderful facility, and I am in touch with many patients that are going there, or other hospitals in the UK that have CAPS or other autoinflammatory diseases. If you would like to connect with them, let me know with a private email at or through our website at I wanted to tell you that there are small, but growing number of cases of variant CAPS, and some families that have a mutation that can cause CAPS symptoms in some members, but some can have the gene mutation, and not show symptoms. Many have the V200M mutation, but some have other mutations. I am in touch with many with these forms of "variant CAPS"and can help you get connected with other patients that have this in their family. Most CAPS does not present this way, but there are some unusual presentations, like Alan had, and we are really at the tip of the iceberg on understanding all the genetics right now. Here is a helpful article about some people in the UK and elsewhere that had some members in a family with the gene, that showed symptoms, and some that had the mutation without symptoms.;jsessionid=09738D0CB5A36F67703D723F1877BD7C.d01t02 Here is the main info that you might find interesting: "In contrast, V200M, which was present in all subjects with MWS in family C but also in the unaffected grandfather (Figure 4), has also been associated with FCU susceptibility (12). The V200M variant was present in 1 of 130 Caucasian controls and 2 of 48 Indian controls and was also identified in 2 cases among a group of 50 subjects with apparently sporadic periodic inflammatory disorders. Review of these 2 subjects, both of whom had periodic fever, revealed that the clinical features bore some resemblance to those of MWS and FCU/FCAS, although the resemblance was not sufficient to make a diagnosis by clinical criteria. The first patient had limb pains with atypical rash, and the other had urticarial/edematous-appearing skin lesions with histologic findings showing a predominantly polymorphonuclear leukocytic infiltrate consistent with FCU/FCAS, but no sensitivity to cold. " Some people that have the mutation that do not present with full CAPS have had selective symptoms or atypical ones. It is good that you are not having any Mitch! Let me know if there is anything we can do to help you to get connected with others in the UK, or if you need information. Since 2006 The NOMID Alliance is dedicated to increasing awarenes, care and treatment for patients with CAPS and other autoinflammatory diseases.We have a lot of resources online at our website, to print out,or to have mailed to you to help. There are also some helpful patient groups that you can find in the Connect area of our website at: Best wishes, Karen Durrant The NOMID Alliance