Meet, discuss & support other patients or families living with Familial Mediterranean Fever. Participate in group discussions. Contribute to topics, or just share what's on your mind
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Soy Marta, esta semana hemos sabido que mi hijo de 4 años tiene FMF. Estamos a la espera del informe para precisar que mutacion tiene.
Alguien nos puede decir donde podemos obtener mas informacion sobre FMF en niños??
Just search Familial Mediterranean Fever on google.com
FMF is the same whether child or adult as far as medical data goes, but here are a few sites that may help:
First go to a website where you will have to register. thelancet.com - This is the DOCTOR's JOURNAL that ALL doctors USE!!! It is FREE but in order to search you have to fill out the registration form. They want to know what field you are in. I believe there is a field called RESEARCH or something like that. FILL That one in. You are doing RESEARCH. :-) Once you get the registration screen name and password, you can search for anything medical. In the search engine put Familial Mediterranean Fever. A LOT will come up. The piece you are looking for is:
Familial Mediterranean fever
Eldad Ben-Chetrit, Micha Levy
[Volume 351 Issue 9103 Page 659
Click on the TEXT connection for this peice and it will come up - be sure to click on those diagrams (MAP of spread of FMF and the other one showing HOW FMF works.
Here are some other URLS that you can go to,
NORD - National Organization for Rare Disorders, Inc. www.rarediseases.org/search/rdbdetail_abst...
Gale Encyclopedia of Medicine: Familial Mediterranean fever www.findarticles.com/cf_dls/g2601/0005/260...
eMedicine - Mediterranean Fever, Familial : Article by John Meyerhoff, MD www.emedicine.com/MED/topic1410.htm
QJMed -- Abstracts: Grateau et al. 93 (4): 223 qjmed.oupjournals.org/cgi/content/abstract...
There is an FMF support group written in English here:
FMF Support mailing list:
In the USA research is being conducted here:
Familial Mediterranean Fever and Related Disorders: Genetics and Disease Characteristics
This study is currently recruiting patients. You have to pay for your transportation to Bethesda, and your room and meals while there, approximately two nights, but ALL tests, labs, doctors exams are FREE, paid for by our taxes
Contact info: 1-800-411-1222
Muchas gracias Nancy, me pondre en contacto con las direcciones que me das, en cuanto al reclutamiento, creo que no sera posible, vivimos en Barcelona.
Yo tambien tengo FMF, y de momento estamos siendo tratados en el Hospital Clinic de Barcelona.
First I am so thankful to have found this website and support group. I am 31 years old and have had from FMF since I was 10 years old. My husband and I have been trying to conceive for the past 2 years with no luck. I've started going to a fertility clinic and they had me go through extensive testing and said everything looks normal and there should be no problem getting pregnant (my husbands tests are ok to) so this month we are going to try the IUI method. I've been taking my cochicine everyday and I also took a round of clomid 100 for 5 days.
My question is does anyone have information regarding FMF & pregnancy the only thing that I found was that a third of women with FMF are infertile but I can't find out why they are infertile. Is it because of scar tissue that can build up due to the attacks? I also read that 25-30% of female FMF paitents are more likely to miscarry, again i can't find out why.
For me I get attacks if there is sudden change in my lifestyle, stress, etc.. For example I tried acupuncture as a natural way to help with my fertility and I had an attack every month. So I'm afraid that if I do get pregnant that will trigger an FMF attack and make me miscarry.
Can anyone give me some advise?
I want to say to same as NancyS said.
Yes two years are not a short time, sorry for that. Unfortunately some fmf patients get pregnant after 12-18 years.
You know that get stressed is not good if you want to get pregnant.
Dit you see that 25-30% miscarriage at this link www.wellness.com/reference/allergies/famil... . This publication is not new.
Besides did you see my posting here on the forum "pregnancy outcomes in woman with fmf"?
rarediseasecommunities.org/en/communit... (2 links)
Thank you so much for sharing that information about our uterus not shedding entirely each month. I always wondered... That has been my problem all through out my teenage years before I was diagnosed. I always noticed a pattern that after my "time of the month" was over by 3-5 days I would start having an attack. I lived in Egypt during my teenage years and women there practice abstinence before marriage so every time I would go to the hospital or to a Dr. they would say "oh that's because you're not married" (i.e not sexually active) I can't believe how dumb this sounds! But it is true. I was told that after "Marriage" everything would disappear and my hormones would be all regular. I wasn't diagnosed until I was 26 (5 years ago) and the Dr. Here in the U.S. almost fell out of his chair from laughter when I told him what I've been told.
Anyway, today is the half way mark... I should find out next Wednesday if I will be a mommy or not. I never got a laparoscopy done. I've gotten the HSG test and that was perfectly fine. So I wonder if the HSG test came back fine would I still have to get a laparoscopy to see if there is any scar tissue??
Yeah - I was told I had sexually transmitted diseases that were causing the infections every month. My husband was my first and only and I was his second and last partner. This was all very confusing and caused a lot of conflict.
I wonder if you had many pelvic infections from the issue with the uterus not shedding if there is any scar tissue from these infections blocking anything. A friend of mine recently had a laproscopy done because of severe pain she was having one side that time of the month. She ended up having a huge build up of scar tissue that formed from ovarian cysts that would burst. The scar tissue attached itself to the intestines. Her doctor advised them to consider moving their wedding day up or try to get pregnant before the wedding because with each menstrual cycle the scar tissue will probably come back. She doesn't have FMF but it is something to think about. She had all sorts of tests (pelvic ultrasounds, cat scans etc.) which showed nothing. The only thing that caught it was the laproscopy. They also squirt dye in the fallopian tubes, uturus etc to make sure they are clear and do not have any scar tissue. When I had my c-sections (even my first one) they commented on how much scarring I had. The second one took a really long time to get our son out because they said my body was too good at healing from the first c-section. That was before FMF diagnosis. Our body is always on the defense.
I would do every other diagnostic procedure first, but if all are normal, the laproscopy might be the only way to get real answers. You might have to take additional colchicine that week. They do not cut you open, but go in bellybutton and two side tiny holes with a tiny camera.
Keep in touch. I will be sending positive thoughts and prayers your way.
L’AFFMF (Association Française de la Fièvre Méditerranéenne Familiale et des autres Fièvres Récurrentes Héréditaires) à votre écoute.
•L'AFFMF - www.affmf.org/
o Qui sommes-nous ?
Les membres de l’AFFMF
Le conseil scientifique
Nos moyens d'actions
o Nos activités
Ateliers parents – enfants
•Les fièvres héréditaires
o FMF/Maladie Périodique
Stérilité et grossesse
o Le TRAPS
o Le syndrome de Muckle-wells
o L’Hyper IGD
o Le PFAPA
o Centre de références
o Consultations enfants
o Consultations adultes
o Consultations à l'étranger
•Vivre avec la FMF
o Vie scolaire
o Vie professionnelle
o Les questions du quotidien
o Les questions du mois
o Point presse / médias
Comment lire facilement la version anglaise du site de l’AFFMF
Marche à suivre : utiliser « Microsoft translator » fournit avec BING de Microsoft.
Détail de la manipulation.
1. Ouvrir le site AFFMF : www.affmf.org/ dans internet explorer de Microsoft
2. Touche droite de la souris : Traduire avec BING
3. Détection automatique ------------> Anglais
4. Le site entier passe en anglais
5. Bonne lecture à tous