Communauté Fièvre Méditerranéenne Familiale

Discutez ensemble avec d'autres malades touchés par Fièvre Méditerranéenne Familiale, leurs familles ou dites-nous juste ce que vous avez sur le cœur.

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EVENEMENT

BONJOUR
A l’occasion de la journée mondiale des maladies rares
L’association Marocaine de la fièvre méditerranéenne familiale organise le 28/02/2015 la première journée nationale, sous le thème (Pour une meilleure sensibilisation sur la fièvre méditerranéenne et des autres fièvres héréditaires’)
Nous vous invitons à partager cet événement avec les patients
Je vous envoie les liens des sites qui ont déjà publié notre communiqué de la journée pour information et éventuellement diffusion
http://www.oujdacity.net/national-article-...

http://www.medecine-maroc.com/t22298-Journ...

http://www.rezoweb.com/forum/sante/myasthe...

http://www.doctinews.com/images/pdfagenda/...

http://pharmacie.ma/uploads/pdfs/journee-i...

Président de l’AMFMF
Jamal Abdelmajid GHZALI

varicose veins

My daughter has been on colchicine since she was 3.. now she has severe attacks of aching varicose vein pain which is debilitating to the point where I had to carry her out of the shower, seat her and elevate her legs. This has been happening frequently recently, she is now 13 years old. Is the colchicine to blame? I've read that it has been reported to the FDA for similar events? and does it cause delayed puberty??

FMFSPAIN
modérateur

I Jornadas en España sobre Fiebre Mediterránea Familiar y Síndromes Autoinflamatorias

La Asociación de enfermos de Fiebre Mediterránea Familiar y Síndromes Autoinflamatorios de España se complace en invitarle a las I Jornadas en España sobre Fiebre Mediterránea Familiar y Síndromes Autoinflamatorios que tendrán lugar en la CASA DEL MAR. Calle Albareda 1. Barcelona. España.

ENTRADA LIBRE HASTA COMPLETAR AFORO

VIERNES 27 DE FEBRERO DE 2015

11.30-11.45h – Bienvenida
11.45-12.00h – Introducción: Las enfermedades minoritarias en el marco de la sanidad. Ponente: Dra. Pilar Magrinya, responsable de las enfermedades minoritarias del Departament de Salut de la Generalitat de Catalunya
12.00-13.00h – Enfermedades autoinflamatorias: Historia y situación actual. Ponente: Dr. Juan I. Aróstegui, servicio de Inmunología-CDB. Hospital Clínic. Barcelona
13.00-14.00h – Fiebre Mediterránea Familiar y síndrome PFAPA. Ponente: posiblemente un reumatólogo pediatra (pendiente de confirmar)
14.00-15.30h – Comida
15.30-16.30h – Diagnóstico genético en las enfermedades autoinflamatorias. Ponente: Dr. Jordi Yagüe, Jefe de servicio, servicio de Inmunología-CDB. Hospital Clínic. Barcelona
16.30-17.30h – Amiloidosis secundaria en las enfermedades autoinflamatorias. Ponente: Dr. Josep M. Campistol, Director Médico. Hospital Clínic. Barcelona
17.30-18.00h – Descanso- café
18.00-19.00h – Tratamientos. Ponentes: Dr. Josep M. Campistol, Director Médico. Hospital Clínic. Barcelona y un reumatólogo pediatra (pendiente de confirmar)
19.00-19.30h – Importancia de la investigación en la salud. Ponente: Dr. Elías Campo. Director de Investigación del Hospital Clínico de Barcelona

SÁBADO 28 DE FEBRERO DE 2015

10.00-11.00 Ponente: Prof. Janine Jagger. “Aportaciones novedosas de la comunidad de enfermos a la comprensión y el tratamiento de la FMF”
11.00-11.30 Descanso café
11.30-12.30 “La nueva medicina personalizada: diagnóstico y medicación a partir del genoma de las personas”. Ponente: D. Joaquín Dopazo. Jefe del Departamento de Genómica Computacional. Centro de Investigación Príncipe Felipe. Valencia, España
12.30-13.30 Ponente: Dña. Malena Vetterli: “Experiencia en contacto con enfermos de FMF”
14.00-15.30 Comida
15.30-17.00 Grupo de Ayuda Mutua con Dña. María Palacín: Psicóloga y secretaria académica de la facultad de psicología de la Universidad de Barcelona. En colaboración con FEDER
17.30-18.00 Descanso café
18.00-19.00 "Pasado, presente y futuro de la asociación FMF ESPAÑA. Nuevas iniciativas" Ponentes: Mónica Inmaculada Tortosa Fito y Maria Rosario Suarez Cordon
19.00-19-30 Micrófono abierto. Testimonios

Resistance

Hello,
I am 15 years old and I have been suffering attacks since I was 44 days old. I have resistant to ever single medication including Colchicine which is really frustrating. Around 1 year ago I began to take daily injection on Anakinra. This is very agitating and frustrating as even when I'm abnormal by having the disease, I am even more abnormal by being resistant to every medication. Is anyone else resistant and shares the same feelings ?

A Friend Who Understands

What would you like to have in a friend who understands your FMF?
Would you like to share your idea of a dream friend?
What is your deepest emotional need as a FMF patient?
Is it for someone to listen? or to hug? or to do house chores?
Is it to pray or to share or to be alone?
Is it with a family member or a friend? same sex or opposite?
Do you have such friend?
Help us understand the social/ emotional/ spiritual side of having FMF.

Someone to listen and empathize and not judge. Unless they are going through it they can't possibly understand how sick you feel or the pain, or how scared you are. But if they show a bit of kindness and a hug that means a lot. I was just recently diagnosed, it took almost four years and a host of specialists to figure this out. Now that I have a diagnosis and hope of treatment it has relieved some of the stress but I'm still worried that the meds will quit working, that my children inherited this gene and may get sick also later in life. No one understands this, or how I am a carrier. So far all I've heard over the years is you're crazy, it's all in your head, you just want to be sick so you obsess over it, and now I hear you're not of Mediterranean descent so you can't possibly have this! Well I'm American with many blood lines in my genes so yes I have it, yes I am sick, and I have no idea how this gene was inherited but it was. Very frustrating..and I'm sure I'm not the only person who has gone through this, nor will I be the last. I'm thankful to have found this site and people who understand.

FMF et H. Pylori

Bonjour,
J'ai 41 ans et j'ai été diagnostiquée avec FMF à l'âge de 11. J'ai pris de la Colchicine toute ma vie et je suis finalement descendu à 1 ou 2 attaques par an, contre une par mois quand j'étais plus jeune. J'ai récemment été diagnostiquée avec un reflux acide et H. pylori, qui est une bactérie de l'estomac. Mon docteur généraliste m'a prescrite Clarithromycn comme l'un des antibiotiques pour le H. pylori. J'ai découvert par mon pharmacien et ma propre recherche que Clarithromycn et Colchicine peuvent être fatals si pris ensemble ! Je vais voir un gastro-entérologue à San Francisco le 10 février Quelqu'un a -t-il eu H. pylori et comment cela était-il traité si vous aviez aussi un traitement à la colchicine ?
Merci,
Kim :-)

Note: Ce contenu a été traduit automatiquement par un service tiers.

FMF treatment during an attack

Hi, I am Armenian male. I have been struggling with this disease since childhood. I have been taking colchicine for the last 20 years, which is a great help. However 3-4 times a year I still get the attacks.
Does anyone know of a treatment or a remedy that will shorten the duration of the attack?

http://emedicine.medscape.com/article/3302...

According to this link, the lines of management of acute abdominal pain attacks of FMF are:

First choice: colchicine, orally, increasing doses as tolerated.
Next is: colchicine IV 1 mg, once a week.
Third: Interferon-alpha, or etanercept, or Anakinra.
Fourth: Rilonacept.

Hope that helps.. Any feedback from other members is really appreciated.

Also this is a good paper about FMF, published in 2014..

http://www.eurjrheumatol.org/sayilar/194/b...

Thank you