CAPS community

CAPS or Cryopyrin Associated Periodic Syndromes are a group of auto-inflammatory rare diseases (MWS, FCAS & NOMID). Below, you'll find testimonies of patients who live with them.

Fifth anniversary AMWS CINCA Patient Group France

Written by AMWS CINCA, published 7 months ago.

They came from the great West and even the southeast of France to welcome Karen Durrant, her husband and their three boys, Nathan, Ethan, Seth and Lucas, arrived from San Francisco (California, East Coast of the United States almost Pacific Ocean), for a friendly meeting to mark the fifth anniversary of the AMWS-CINCA.

Karen, President of the Nomidalliance association (www.nomidalliance.net), American Association based in San Francisco, and Paul, President of the AMWS-CINCA, have received the participants from Plabennec (Finistère) Bordeaux Mérignac (Gironde ) Carquefou, Nantes and Saint Père en Retz (Loire Atlantique) Lyon (Rhone) and Les Sables d'Olonne (Vendee) at the Carquefou headquarters of the association.

Through the efforts of Karen to speak French and our interpreters, Viviane, Coralie, Anaïs and Tanguy, participants were able to talk and discuss symptoms, medications, therapeutic advances and especially about their future that is more serene since two effective drugs are available.

This weekend was too short!

However, everyone has enjoyed the atmosphere of conviviality created by the twenty-four participants at the tables dressed by Francoise Marie-France and Eveline.

The picnic on the banks of the Erdre (tributary of the Loire) allowed us to enjoy the food, the pleasant surroundings of this most beautiful river in France (François the first, King of France from 1494 to 1547, said this during his visit to the Duchess Anne in the castle of Nantes), near the Carquefou only vineyard, the John Port area, which produces Muscadet, Gamay and other “Gros Plant”.

A stroll on the banks of the river and the discovery of the Carquefou city center (18,000 inhabitants), which has preserved its "village" atmosphere, has delighted the walkers.

The pleasure of being together was such that it became almost self-evident that we could not stop there ... and the idea almost imposed itself with great enthusiasm: what if, next time, we would meet our American counterparts in San Francisco!

To follow-up... But there is 8890 km, so a weekend will not be enough.....

Sincerely,
Paul
July 31, 2011
Carquefou

Traduction effectuée par Coralie et Guillaume.

Written by AMWS CINCA, published 7 months ago.

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