Communauté La maladie de Behçet

Discutez ensemble avec d'autres malades touchés par La maladie de Behçet, leurs familles ou dites-nous juste ce que vous avez sur le cœur.

Démarrer maintenant une discussion Vous devez être connecté(e)

children of Vietnam soldiers

Hello,
I am inquiring if any of you, that have been diagnosed with behcets disease has or had a parent of the Vietnam war? I know that this disease is common in the middle east, Asia and japan. Were trying to do some research on soldiers who were exposed to agent orange, seeing how this could be passed down through our parents genes. Our father has been gone now since 2005 due to service related effects of Vietnam. now looking back at what my father had to endure in his last couple of years of life. I wonder why he had ulcers on his genitals and other parts of his body. he had so many other behcets symptoms. that never got diagnosed. My brother who i am inquiring all this for was a caregiver of our father. He would pack up his ulcers and put drops of steroids in his eyes, he would take care of him. our father went blind for the last 2 years of his life due to wrong medications prescribed by doctors for his uveitis. everything that our father went through were now experiencing with our brother. Joseph seems to slowly be deteriorating the doctors had him on remicade and now they are giving him chemotherapy he finished with his 3rd treatment on Sunday. I am doing research on cryotherapy, since it is supposed to resupply the body providing a boost of energy and healing properties. it stimulates the release of endorphins. the production of anti-inflammatory proteins. Has any of you tried this treatment or would you recommend it.

Yes. My father was a Marine. 1st Battalion, 1st Marines, Charlie Company to be exact. He also served under a couple of other Battalions/Companies in Vietman from what I understand. He died at the age of 43 back in 1991 and always swore Agent Orange is what killed him. He had a whole list of problems including Mesothelioma. He wasn't just exposed to Agent Orange, he was drenched in it many, many times. He said it was all over them, in their food, in their drink, etc. I have often wondered if it could be the cause of my Behcet's, but have yet to find anything solid on it. My dad's last tour in Vietnam was in 1968 or 1969. I was born in 1973. I was not diagnosed with Behcet's until 2001 at the age of 27. My daughter was also diagnosed at the age of 15 in 2008. If you run across anything or just want to talk you can e-mail me at eadun2000@yahoo.com. Take care and good luck on the research :)

Behçet's disease is not yet determined a cause. However, environmental factors that trigger the disease is more than the copper and phosphate in the body, infectious agents are focused on bacteria or viruses, and genetic predisposition.

behcet's

I am inquiring for my older brother Joseph Andrew, he is currently in the hospital for a flare up. He did a MRI and discovered more lesions on his brain. He's had these symptoms for about 11 months now but just got diagnosed recently. the doctors had given him steroids to control the inflammation in his eyes since they were blood red. they also gave him remicade a bio therapy medication. today his rheumatologist suggested that they switch the medication to cytoxan a chemo drug. he took his first dose today.

*my question is if anyone has experienced these symptoms what has been the treatment for this particular side effect from this disease.

* my brother has had severe mouth ulcers and blood shot eyes as well as joint pain, he sleeps all day long and has no energy now much less when he is in full blown chemo mode.

I am not sure steroids will help with brain lesions. I am told Prednisone (steroid) probably won't help with brain lesions. Humira injections might/will.
Wishing the best for your brother.

robpleticha
modérateur

Here is a working link:
https://www.rareconnect.org/uploads/docume...

Have a good day. If you ever run into anything not working, please write me: robert.pleticha@eurordis.org
Thanks,
Rob

richard1
modérateur

Hi Rob

Thanks for the working link
Regards

Behcet in Deutschland

Ich möchte eigentlich keine Diskussion starten. Ich bin nur interessiert, ob hier einige Mitglieder aus Deutschland.
Ich habe angefangen die Mitgliederliste durchzusehen, aber das sind ja so viele.

Auch bei mir hat sich mein Leben sehr verändert.

Ich habe keine Lust zu erzählen, was alles war. Ich schreibe derzeit einen Blog, um zu schreiben, was alles so IST.

Mein etwas anderer Blog zum Thema Leben mit Behcet!

http://seidenstrassemeinreisebericht.blogs...

Hallo! Habe kurz deine Geschichte gelesen. Melde Dich bitte bei mir, wenn Du magst.
Kopf hoch, bitte! Weiß wovon ich spreche :-)
VG
Gabi

Bonjour Gabi,

Merci pour votre message. Je l'ai lu (à la fin ...). Vous avez assez bien décrit ce qui est important. En ce moment, je me sens encore assez bien et je peux voir les changements d'une façon positive .... jusqu'à ce que ça recommence, je suppose.

Comment vous sentez-vous en ce moment ?

Y-a-t-il quelqu'un de Chypre souffrant de la maladie de Behcet ???

Je m'appelle Clery. Je viens de Chypre et j'ai été diagnostiquée avec le syndrome de Behcet il y a 7 ans. Je n'ai jamais rencontré ou parlé avec d'autres personnes atteintes du syndrome de Behcet. Je serai « heureuse » de rencontrer ou de parler avec quelqu'un ayant les mêmes problèmes que moi !
Je souffrais sans savoir quel était mon problème.
Quand j'ai été diagnostiquée avec le syndrome de Behcet, j'ai été vraiment choquée d'apprendre par le médecin qu'il n'y avait pas encore de traitement pour cette maladie.
Il m'a fallu environ deux ans pour réaliser que j'allais devoir m'habituer à ces problèmes et continuer ma vie.
Je suis heureuse d'avoir pu jusqu'à présent et malgré tous les problèmes et douleurs qui m'accablent, être de capable de surmonter cela sans que la maladie n'ait trop affecté ma vie et celle de ma famille.

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

Hello;
I can say for Behçet's disease. I understand very well all the people who were diagnosed with Behcet's. I did interviews with university hospitals and pharmaceutical factories in my country. I did not get a positive response from both units. There is nothing to be done about Behcet disease so I'd like to discuss with the doctor. Behcet's disease occurs in people with suppressed immune systems.

martacampabadal
modérateur

Hi,

This map shows at least 4 people living with Behçet's in Cyprus: https://www.rareconnect.org/en/community/b...

Have you added your mark in it?

Hi Marta,
I added my mark on the map today. Thanks for your assistance.

Behcet et les complications neuro- et ophtalmologiques.

Bonjour à tous les membres,

J'ai appris il y a peu que j'étais positif au marqueur HLAB51. Apres plusieurs année d'errance thérapeutique, de fatigue intense, de problèmes cutanés dont des furoncles et inflammations des gencives plus que des aphtes, des douleurs aux articulations, une vision qui se détériore progressivement, mon médecin interniste a parlé d'un probable Behcet.

Le fait est que je rencontre également d'ENORMES difficultés de cognition, de concentration, de la parole et que j'ai des vertiges absolument tout le temps. Mais mon medecin pense que cela ne peut pas être à cause de la maladie de Behcet. Dernièrement j'ai refait ce que j'appelle une "crise" durant laquelle je perds davantage de mon équilibre, je dis des mots pour d'autres ou les mélange, ai des pertes de mémoire, des sensations d'absence et n'ai l'impression de ne vivre que sur des réflexes. J'ai les oreilles très douloureuses et l'impression que mon crane va exploser aves des douleurs rres localisées sur diverses parties du crane. A ces moments la je reste dans mon lit et dors comme je sais le faire en ayant pris de l'aspirine. Je me sens incapable de faire quoi que ce soit. Et j'ai l'impression de perdre un peu plus de moi a chaque crise.
Le medecin dit que ça ne peut pas être neurologique car il n'a rien vu sur une irm passée il y a plusieurs mois, mon ophtalmo ne trouve rien à dire sur mes problemes de palinopsie, de mouches dans mon champ visuel, de photophobie violente, de scotomes scintillants et de ma vue qui baisse sinon que j'ai un défaut visuel qui ne se manifeste que maintenant (chose que je veux bien croire mais je ne pense pas que ca explique tout ...)

J'ai 25 ans, Je suis sous colchicine depuis quelques jours seulement, j'ai l'impression que cela a un effet sur ma peau mais je me dis que je n'ai peut être pas assez de recul pour le moment.

Est ce que vous rencontrez vous des problemes de memoire ? De concentration ? De moments où vous êtes tellement malade que vous avez l'impression de devenir délirant ou dément ?
En ce moment suis en pleine crise et j'ai le sentiment que mon crâne va exploser, avec des boutons douloureux sur la surface du crane, je n'ose pas aller voir mon medecin car je n'ai pas envie de prendre sur ma douleur pour finalement entendre que tout cela est dans ma tête.

Je vous remercie de vos réponses et de vos témoignages, qui m'ont deja aidés à comprendre certains de mes maux.

At the end, was a good end!

Hi! I would like this to be a shosrt story and a message of hope to those who were just diagnosed to suffer from a Behcet.
I was 25 the first time I had a "reaction". I reacted to an antibiotic, so strong that I left to emergency and was received there with a: "how did you burnt yourself?". I literally looked like a monster!
This was only the beginning...unfortunately! I then had years of urine infections, oral and vaginal ulcers, acne, joints pain,...
I took so much and so many different antibiotics...OMG!!!
After 1 year, where doctors run crazy looking for the cause (they were going in the right direction but couldn't find it)...IT STOPPED!
I had 3 years of peace!
All, even worse than before, showed up in 2010! I remember crying in the shower, willing to be dead instead of suffering from pain and fighting against my monster face!
I won't list how many visits to doctors, sick days, tones of make up, medicines,... I learnt few things:
- Control your mind and your feelings! Be calm, no stress at work or at home, be positive, look for people who love you,... Behcet loves to see you down! Never give him a chance!
- Limited sport. I used to do A LOT of sports before. I can tell you that the more I do, the worse my Behcet gets. Sport is always good but not much.
- Watch out what you eat! Milk products are a NO GO for me...I miss them!!! But my body thanks me everyday I don't take them. No hot food! Spicy food doesn't get on well with my Behcet! Same with tomatoes and lemons.
- Ibuprofen is my best friend! After having to take Azathioprin 1,5 years, I get on very well with 800mgs every 12 hours (1 week, max 2).
- sleeeeeep!!!! This is one of the best medicines!
- No alcohol...as little as possible!

The end of my story is: "after all, it was a good end!". If you have diagnosed of Behcet...BE HAPPY!!! There are so many people suffering for so many years!!! I am happy I know what I have and I "kind of" know what to do!!!
I have to get on with my Behcet, with who I am and make the best out of it!

If any of you have a question, happy to answer.

Warm regards and lot of hope and positivity to those suffering (my face looks horrible today, by the way!) :-)
Gabi