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MWS stats

tarah Message
21 Feb 2011, 06:26 AM

Does anyone know any statistics reg. MWS? I really was wondering if people actually can die from this. Sounds awful but wondering. Is my son(15) gonna be able to live a long and healthy life and not hurt if we start medication on him? Soneone had told me a 12 yr old girl was on the Cake Boss made possible by make a wish foundation and that kinda scared me and made me realize this is bad!!! Just needing to know.... Tara
tarah Message
21 Feb 2011, 06:32 AM

Also forgot to ask what the chances were on hearing loss. I have a 2 year old deaf baby, just had a cochlear implant. Can't help nut worry about this and also wonder if my baby may have it? No symptoms yet.
jenpitt15 Message
21 Feb 2011, 12:51 PM

It was my daughter that was on Cake Boss b/c of Make-A-Wish. We have been told that wishes granted are NOT always b/c of life threatening illnesses (although that was stated on the show) but more so b/c my daughter endured 9 1/2 years of not knowing what was wrong w/her and getting poked & prodded numerous times. She was diagnosed at age 9 1/2 and had hives since the day she was born. She does have the progressive hearing loss associated w/the MWS. Nothing has ever been said about if the syndrome is actually life threatening but I think if left undiagnosed, it can cause issues w/the kidnes thus being life threatening. I asked about her being able to have children & was told most likely yes but they really don't know side effects of the Ilaris drug even though it is FDA approved. Kind of scary but it has made a tremendous difference in her life. Well worth the cost of the drug.
tarah Message
21 Feb 2011, 01:02 PM

Oh my goodness! Small world. My sister-in-law saw the show and called and told me about it. When she told me I started searching and trying to get in touch with you. I went as far as e-mailing principle at school and asking if he would pass on my info. to you. He said he would forward it to middle school, I think. I hope all is well with your daughter. I am so glad there are sites like this one to educate people now. When Jerrod was dx there were hardly any. Good luck to you and daughter.
Karen10 Message
23 Feb 2011, 12:57 PM

We're a newly diagnosed family and range in age from 2-60. From what I've been told the prognosis depends upon any development of amyloidosis. I'm in my thirties and the doctors want me to start on anakinra very soon to prevent amyloidosis and further hearing loss. All the adults in my family have hearing loss to some extent, with an onset from around 10 years of age up to around 25yrs.
stopcaidnow Message
24 Feb 2011, 04:20 AM

Jenpitt15 you will be glad to learn about Project1 Please visit read Brody's story(Brody turns two on Feb 28th) and Project1. It took 19 months to get a firm Dx. for Brody, so I understand what you went through for your daughter. Together WE WILL make a difference. I contacted Senator Casey today and told him about the CME project. I also signed on a writer to write children's books for those suffering with CAID and the siblings. Please feel free to contact me at I am glad you and Tara connected. If you both want to send me pictures of your kids, I am posting them on the site and at the Gala so people see the children who are suffering Lisa Founder/President StopCAIDnow,Inc.
tarah Message
24 Feb 2011, 05:35 AM

Lisa, It is wonderful that information is out there reg. these rare diseases. I would love to be active also in getting people educated. I was wondering if any doctors from vanderbilt are aware of these sites or doctors in my area, western kentucky. It would be great to know the dr's. close to us had the proper knowledge and education. i am going to try and forward links of some of the sites to local doctors and the doctors in Vanderbilt if that's ok. Who knows, they may already know about these sites but if not it would be great to make it available to them and whoever else. You are on facebook, right?LOL . what a way to spread the news fast.. Again your dedication and purpose is so assuring. This can get better. If all we've been thru can help make it easier for others, what a blessing that would be.
nomidalliance Message
24 Feb 2011, 07:01 AM

Tarah, One of the board members for The NOMID Alliance has been getting information out to doctors in Kentucky and also Vanderbilt. There is never enough info and awareness though! If you would like to connect with her, she would be more than willing to help, and their family has CAPS. As for prognosis, most patients with MWS have normal life expectancies, but you are right that the amyloidosis is a great risk factor that can affect life. However, the medications that target the high levels of Il-1 being over-produced in the body can greatly halt the development of amyloidosis and may also prevent some of the other complications ,such as hearing loss but more years of research are needed. The current belief is that if medications are started before hearing loss has developed, or progressed too far that it can be halted, or not develop further. This has been seen in a lot of studies so far, so we are hopeful that this will be the case, as long as patients have good control of their inflammation while on the right medications. My own son had the start of sensorineurial hearing loss before he started on medications at 4.5 years of age, and his issues reveresed, and have never returned. He is now 11. He was very fortunate to have been diagnosed and started onto medications before the damage in his body became permanent in many organs. Most patients with MWS and FCAS have been able to have children, and it is a 50% chance of having a child inherit the genetics for CAPS from an affected parent. With NOMID, which is a form of CAPS that has widespread systemic inflammation in the body, they used to feel that 20% of children with severe NOMID would not live to adulthood, but now with the proper medications, this is not the case as long as the patients are on the right medications and under good control of their symptoms. There has never been such a statement in regards to MWS or FCAS for increased risk of death. Patients with the NOMID form have significant inflammation throughout the body that attacks all the organs, including the brain, and they have many other complications. Patients with MWS and FCAS do not have systemic damage, but selective issues such as hearing loss, and amyloidosis that can cause buildup and damage to the kidneys and liver over many years that can become a problem in later life, but children do not tend to have the amyloidosis causing organ damage and failure most of the time. I hope this may help answer your questions, and if you would ever like to discuss this or talk to others in your area with CAPS, please contact me at 415-831-8782. We are here to help you, and there are people in your area that would be a great resource to you that I can connect you with, but they are not on this forum so I cannot share their info here. Have you gone to the website? The CAPS guidebook that you can download has a lot of info about MWS, and was written by myself and the leading experts on CAPS, including Dr Hal Hoffman and Dr Goldbach-Mansky. I am also the mother of a child with CAPS, and am a pediatric nurse. We have helped many families to get more answers and help for these diseases. It would be nice to connect to help you get answers to your questions. Best of luck! Karen Durrant
nomidalliance Message
24 Feb 2011, 07:05 AM

Hi Karen10, Thanks for finding this forum, and I really hope that you can start on the anakinra soon. You will be amazed how your life will change, and the improvements once you do not have to suffer so much daily from CAPS symptoms! There are more people getting diagnosed in Australia that I am hearing from all the time, and there is great hope that the Ilaris medication will be available there for patients, but it is more expensive than anakinra. I hope that my note to Tarah about hearing loss and amyloidosis will also help you too. Feel free to contact me as well, which for you would be best through email at Best wishes, Karen Durrant The NOMID Alliance
stopcaidnow Message
24 Feb 2011, 12:08 PM

Tara Good morning and hope you both are doing well. The CME program will be able to help Doctors throughout the US and in Europe learn about childhood Autoinflammatory Diseases and yes MWS is included. I have never seen anything so detailed, it truly is an incredible program. StopCAIDnow,Inc. is about to have a few global channels. So, trust me the information will be out there. Your help is welcome. I will email you later this morning. Many Doctors have been to the web site, so inviting them to visit the site to learn more about these diseases and about the CME is a great way to get them more familiar. Also, we are adding to a few Foundations database, and when that is completed, I will send you the sites. I have two other organization you may be interested in contacting as well. I will email their information to you. Thank you, and thank you Karen for your information as well. Lis Founder/President StopCAIDnow,Inc.
creichman Message
28 Feb 2011, 08:06 PM

to all of you reading these topics. i started the section lots and lots of questions. reading all of your information that you post makes me feel like im not alone any more. I am a mom of three kids and this time the shoe is on the other foot. I am the one going thru all the symptoms, the the testing, the trials of new medicine. i know what you are all going thru because i have been there when my son josh was finally diagnosed with aspergers At the time no body knew what was wrong with him, they said it was nothing, they tried this mnedication and blamed it on me, finally after 12 years, he has asperger, it was so rare at that time, i didnt know where to go or who to turn, i only wish i had a site like this. its very hard to going thru this syndrome as an adul,t still not knowing if this is is exactally what i have, but going thru this as a parent watching your child suffer is even worse. talk to as many people as you can because it really helps even if it is online. i have tried the kineret and had a terrible allergic reaction to it I did great for two and half weeks and it was like a miracle. i just started ilaris and again this has been another miracle, only you take this injection every 8 weeks instead of once daily. i live in Cincinnati ohio and my rhumetologist have become my best friend. going above and beyond any dr. if anyone needs his name i would share it in a minute. i also can get any parent hooked up with a pediatric rhumetologist at Cincinnati children s hospital . good luck to you. rare share has helped so much
jenpitt15 Message
28 Feb 2011, 08:43 PM

Just curious as to who you would recommend @ Cincinnati Childrens? My daughter currently sees Dr. Esi Morgan-DeWitt. Also, who is your doctor? My daughter is 10 years old. She currently takes the Ilaris shot and I do agree, the shot every 8 weeks is a total blessing.
tarah Message
1 Mar 2011, 03:04 AM

Karen, i am goin to get in touch with you hoping you can provide me some info. that can be passed on to Jerrod's school. Have always had issues about him leaving class for the bathroom when he runs out of "hall passes." This truly angers me. I have talked to them about it but didn't really help. I will try to catch you tomorrow. @ JENPITT15 I caught episode of cake boss that you guys were on. The first time i have heard anyone mention MWS publically. It was good for my husband to hear that it is real. someone besides me mention it. He is jerrod's stepdad and says jerrod is fine, just because he gets a rash ever now and then. He thinks i am flippin out trying to get him to doctor. He says the more you read and talk about the worse jerrod will be, we'll you can only imagine my reply. Jerrod's bio. dad just had his 3rd cholectomy due to Chrons disease. He now has an ileostomy and from what i understand it is kinda the same type of disease as MWS.. Makes me wonder what the links could possibly be, BOTH autoimmune disorders, my mom also has Chrons....
stopcaidnow Message
1 Mar 2011, 02:18 PM

Tara, I am sure Karen is on top of it, but also let me know how the process is going. I have Doctor writing something for a parent/school on PFAPA. We understand the frustration you feel, and we don't want Jerrod to feel singled out or not understood. They already go through so much. If we can help make other things in their life easier, then we will do our best to do it! Lisa
nomidalliance Message
1 Mar 2011, 05:08 PM

Tara, Sorry I did not get onto this forum yesterday, but I will try to answer your questions today! We have a lot of materials for you to have to help your son, and educate everyone that is not listening to him. Please call me today at 415-831-8782 and we can talk, and I have some materials that you can pass out at the school and elsewhere. We have some business card sized CAPS information cards that have the main symptoms for CAPS on them, and other info about the syndrome that he could have in his backpack or pocket. Also, we have a very detailed CAPS medical guidebook that was written by the leading experts on CAPS that may be helpful. In regards to Crohns, my husband and his brother have that, and my middle son has CAPS. He used to have a lot of bowel issues before going onto medications, and no one knew why. Now there are some research articles published that have found some connection with GI issues, especially Crohns, IBD and other issues and autoinflammatory diseases, and some diseases have the same area of genetic mutation or Crohns and autoinflammatory diseases. There are a few patients with CAPS that are having more significant GI issues, despite medications than expected, and they still do not know all that is going on, but the experts are working on it. One patient was also found to have food allergies, and celiac disease (Gluten issues) on top of her unusual CAPS mutation (not in the normal region, and her family has a few people with the mutation that do not have symptoms, but her mom has the disease,) By the way, they are in your area of the world too. I need to get you two connected, so please call me! Yesterday was Rare Disease Day, and we had a lot of projects going on, and I did not get to everything! Sorry to miss your message. We had people on TV with a Rare Disease rally in Chicago, and many other things for the day, plus CAke Boss re-aired the episode with Jen's daughter! On top of that, CAPS was on House MD- but it was based on a rare variant CAPS, not the traditional symptoms or most forms of CAPS and was a bit overdone. If you see it, realize that it is NOT based on most CAPS, and was overly done for dramatic effect. Nice to see an autoinflammatory disease get featured though, and it will likely draw some attention to this rare disease. The case they likely based it on was someone in the UK that had a more sudden onset in his 40's but does not have the genetic origin for CAPS. They really should have been clear on that, since it will likely scare and confuse many people. Best wishes, Karen Durrant
stopcaidnow Message
1 Mar 2011, 05:17 PM

Agreed Karen, and glad you can help. Michelle did a great job in Chicago yesterday. NORD and NIH also had a very successful day celebrating and making others aware of Rare Diseases Day! Together we will make a difference!