Communauté La maladie de Behçet

La maladie de Behçet (MB) est une maladie inflammatoire systémique d'origine inconnue.

Take One More Step For A Healthy Life

Ecrit par Ouarda, et publié il y a 4 mois.

SIMBA Italy representatives along with colleagues from the Turkish Behcet’s Association attended the training course "Take One More Step For A Healthy Life" from July 25-31 in Aksaray, Turkey.

An important part of the visit for SIMBA representatives was a visit to the Provincial Health Department. During this visit, the Italian Behcet’s group was able to ask questions about Behcet's disease in Turkey to the Medical Director of the Aksaray Hospital, who, explained the situation in that region of Turkey for patients with Behcet’s.

There are 300,000 patients in Turkey followed in more than 200 teaching hospitals, many of which have a special department for Behcet's care. (An important reference center is in Ankara, the Turkish capital). In some parts of the country around 420 people out of every 100,000 are affected by the condition according to the NHS.

Patients are registered in a national registry and continuously monitored: phone alerts are sent to remind patients of treatments, consultations on the disease are offered and efficacy of therapies are discussed among other topics. This allows a more general understanding of the disease and the incidence of its consequences on the population with early detection and immediate treatment of the syndrome.

The Medical Director of Aksaray Hospital has direct experience with Behcet's syndrome, and the proper functioning of the system for recording and monitoring, as his sister suffers from the disease.

Recently, the Turkish health care system began investigating the genetic component of Behcet’s disease and how it is inherited. Many medical authorities have started asking permission to investigate the family histories of patients, find links with Behcet’s disease and other autoimmune diseases. Everything is useful to try to get the earliest diagnosis.

See this recently published article on genetic mutations in Turkey.

All the specialists in Turkey meet annually in a national convention to draft a budget, general guidelines on therapy and discuss which therapies have proven ineffective or too invasive.

These points should cause us to reflect on the situation in Italy… Will Italy ever have an organized and centralized treatment plan for Behcet’s patients? Italy needs to first think of the patient as a human being who has the right to live a normal life, rather than seeing them as a guinea pig for modern therapies that, in fact, do not improve the daily life of the patients.

A person in Turkey has their disease recognized by society, because it Behcet’s syndrome is not so rare in Turkey. When will we get to that point in Italy?

 

Photo of Aksaray courtest of Flickr

Ecrit par Ouarda, et publié il y a 4 mois.

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Associations

  • SIMBA Italy

  • Ass. Française de Behçet

  • As. Española de Behçet

  • UK Behçet’s Syndrome Society

  • American Behcet's Disease Assoc.

Activité récente dans la communauté La maladie de Behçet

  • -

    Behcet's Discussions
    topic, publié il y a 1 jour

    Voir la transcription

    Where do I find responses to my questions - if there are any responses?

    Thank you,
    Summer

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    La maladie de Behcet est de retour
    topic, publié il y a 1 jour

    Voir la transcription

    Bonne année à tous.

    Après mon expérience de réaction aux médicaments antidouleur et un séjour à l'hôpital, je suis à la maison depuis quelques semaines maintenant et mon mal de dos est revenu de plein fouet avec des sueurs nocturnes et d'autres symptômes de la maladie de Behçet. Les symptômes ét...

  • -

    Recherche Sommaire
    topic, publié il y a 9 jours

    Voir la transcription

    De Fondation Groupama, "Les patients atteints d’une maladie de Behçet intestinale traitée chirurgicalement précocement ont ainsi un meilleur pronostic."

    http://bit.ly/solMFz

  • -

    Bechets
    topic, publié il y a 17 jours

    Voir la transcription

    I was diagnosed with Bechet's earlier this year because of mouth sores and very low white count. Well for the last 2 weeks I've been having issues with nausea and vomiting on a daily basis which is very, very draining. Have an appt with a GI Doctor this coming week and have already discussed t...

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    behcet
    topic, publié il y a 22 jours

    Voir la transcription

    bonjour ami behcetique
    J'éspère que vous allez tous au mieux. Poussée articulaires depuis 2 moi et en arrêt de travail.Ca ne passe pas , c'est difficile et du coup j'ai de plus en plus de mal à vivre et à accepter ma situation. Gros coup de blues généralisé en cette fin d'année.
    De plus la sécu...

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    Apremilast, a novel PDE4 inhibitor
    topic, publié il y a 25 jours

    Voir la transcription

    Abstract
    Introduction: Type 4 phosphodiesterases (PDE4) play an important role in immune cells through the hydrolysis of the
    second messenger, cAMP. Inhibition of PDE4 has previously been shown to suppress immune and inflammatory
    responses, demonstrating PDE4 to be a valid therapeutic target f...

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    La dernière collaboration: l'histoire de Millie
    topic, publié il y a 25 jours

    Voir la transcription

    http://www.furtherfield.org/friendsofspork/tlc.html
    Le livre est paru! En-ligne et gratuit. Une version imprimée sortira dans quelques mois, mais vous pouvez la voir dès à présent sur
    http://www.furtherfield.org/friendsofspork/tlc.html

    Vous y trouverez également du contenu sur les difficultés l...

  • -

    l'histoire de Katherine
    topic, publié il y a 28 jours

    Voir la transcription

    Je m'appelle Katherine ; je me souviens bien du vendredi précédant la Fête des Mères en mai 2002. Je me suis réveillée à 5 heures, comme j'avais l'habitude et j'ai rencontré mon groupe pour faire notre longue course habituelle. Nous courrions souvent de 3 miles à 10 miles, selon notre courage. Je...

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    TitA putative functional variant within the UBAC2 gene is associated with increased risk of Behçe...
    topic, publié il y a environ 1 mois

    Voir la transcription

    Sawalha AH, Hughes T, Nadig A, Yılmaz V, Aksu K, Keser G, Cefle A, Yazıcı A, Ergen A, Alarcón-Riquelme ME, Salvarani C, Casali B, Direskeneli H, Saruhan-Direskeneli G.

    Source

    University of Oklahoma Health Sciences Center, Oklahoma City VA Medical Center, and Oklahoma Medical Research Foun...

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    L'interleuchina potrebbe curare le malattie autoimmuni
    topic, publié il y a environ 1 mois

    Voir la transcription

    L'interleuchina 2 potrebbe curare le malattie autoimmuni L'interleuchina è nota per il suo utilizzo nel trattamento di alcuni tumori, ma anche per i suoi effetti collaterali in dosi elevate. I ricercatori hanno dimostrato che interleuchina-2 potrebbe essere efficace, a basso dosaggio, per il trat...