Jacqui,

Thanks for sharing your story, and I hope that things go well with your starting medications soon. I really hope that you don't have any bad reactions to CAPS medications! I will be thinking of you tomorrow.

Karen

Hello Jacqui,

On this first day of 2012, I wish a very happy new year and good health to you and your family.

Good health, as I am sure that with kineret you will "come alive", it is indeed a very good medicine for CAPS.

10 of my relatives as well as myself are under treatment for MWS and Well syndrome, one of the diseases of the CAPS.

48 hours after the first injection, all the symptoms have disappeared except hearing difficulties : no urticaria, no articular pains, no conjunctivitis! a dream!

We are equipped with aids for some of us (the oldest, because we have been treated too late, I'll be 70 soon)
but our young people treated from childhood regained the hearing and gave up their hearing aids!

in France, the kineret is not recognized for CAPS but we are treated anyway thanks to our actions towards public services that now accept refunds (see on this forum, my obstacle course)

as an experience, you can also read "Living with Muckle-Wells", this is a summary of my twin sister who is doing very well since receiving the Kineret.

I've been waiting for 32 years before being diagnosed with MWS, and then 32 more years before being treated with Kineret.

like you and many others, we went to see doctors and specialists and unnecessarily absorbed drugs, which did not help our stomach nor liver!

so hopefully you will be soon eligible for the Kineret and I also hope you will hear from you, either through this forum or via the French association that we created : AMWS CINCA email: amws@orange.fr site web: www.amws-cinca.eu
(you can access it directly from this forum)

I benefited from the Kinneret from June 2006 to August 2010 successfully,
one shot every two days.

Since August I have access to the new treatment ILARIS, one shot every 8 weeks, but it is a very expensive drug (12,000 euros a shot), fully covered in France by our health care system. which unfortunately is not the case in Switzerland, Belgium, Germany nor USA.

Karen Durrant will be able to tell you about this. She and her family came to visit us last July and it was a very rewarding meeting. She will be able to help you.

hoping to hear from you again, good luck, do not lose hope, you are not alone.
Paul

As an advocate for rare diseases, as well as having a rare disease myself, I would like to pass along some helpful information about an interesting company, The Rare Genomics Institute. The Rare Genomics Institute is a non-profit organization that focuses on helping patients and families with rare/orphan diseases that might benefit from genome sequencing. Rare Genomics Institute helps patients with gaining access to genome sequencing services, support, and funding. Washington University School of Medicine's Genomics and Pathology Services and the Rare Genomics Institute are planning to award grants for the sequencing of 99 exomes to rare disease advocacy groups. The grants will be free of charge to the rare diseases community and anyone interested, should contact The Rare Genomics Institute right away. Interested applicants should submit letters of interest by April 2, 2012 by visiting the web site for this program at the Rare Genomics Institute site: www.raregenomics.org/rare99x
Mike Dayton

Dear Michael,

This is an amazing opportunity, and I have just emailed the contact email that was on the website about a number of patients that are currently unclassified, complex cases with other family members with the same symptoms that are in need of genetic testing and diagnosis. They appear to have some form of an autoinflammatory disease that is unlike any known at this time, and have been seeing experts in the US, but cannot get coverage for genetic testing from their insurance to explore the genetic causes for their disease symptoms. This would be a great blessing for them.

My name is Karen Durrant and I am the president of The NOMID Alliance, an organization for patients with CAPS and other autoinflammatory diseases in the US.

Thank you for sharing this news!

Karen Durrant

Bonjour Karend et Michael,

merci d'avoir bien voulu relayer des informations très intéressantes pour les malades.

habitant en France, savez-vous s'il existe une société équivalente dans notre pays qui collabore avec cet institut américain ?

bien amicalement

Paul Riviere Président de l'AMWS-CINCA s'occupant des malades CAPS en France

Hi Jackie:

Believe it or not, I live in Vermilion, Ohio. I grew up in Amherst. I think we go to the same Rheumatologist and I think I have you to thank for my recent diagnosis of CAPS. My rheumatologist came in with news that a patient of his came across this disease and was found to have it and he said, "I think that this is what you have too!" For so many years, he would say, "I just don't know what is going on with you". I know that it was very frustrating to him too. I will be starting Ilaris soon and I hope to have some pain relief soon! Looking forward to connecting with you!

Jennifer

Bonjour Jennifer.

c'est très bien si vous commencer Ilaris, je suis sûr qu'après une semaine maximum vous n'aurez plus de douleurs ni d’urticaire.

pour moi ce traitement est efficace et pour de nombreux autres malades de notre association.

merci de nous faire part de votre évolution positive dans votre maladie, car cela va encourager les autres malades à se faire diagnostiquer et soigner.

bien amicalement,

Paul Rivière président AMWS-CINCA (France)