La fibromyalgie est d’être reconnu par les professionnels de la santé en Irlande du Nord comme condition à long terme.
Les gens qui en souffrent se plaignent de douleurs sur tout le corps, ainsi que la fatigue profonde.
D’autres symptômes incluent des maux de tête, la privation de sommeil et des difficultés de concentration.
En dépit de la gravité des symptômes, les personnes vivant avec la condition NI ont dit que leurs voix ont été entendues et leurs symptômes ignorés.
douleurs chroniques
Après avoir été inondés de plaintes, le patient et le Conseil client il y a en Irlande du Nord trois ans pressé le cas pour la fibromyalgie soit reconnue comme une condition à long terme.
Après avoir interrogé les malades et ont fait pression politiciens et professionnels de la santé, des services dédiés doivent être établis dans les fiducies de santé.
Martina Marks, qui vit dans le comté de Down, a dit qu’il était un soulagement à être pris au sérieux.
« Je l’ai vécu avec la douleur depuis 1997. Parfois, il peut être chronique, avec des douleurs dans mes muscles et les articulations, » dit-elle.
« Souvent, la douleur est insupportable et vous devez faire face à un trouble du sommeil, des maux de tête et tout simplement pas être en mesure de faire face à la vie de tous les jours. »
« Tout à propos de la douleur »
Fibromyalgie a déconcerté les experts en santé depuis des décennies. Il ne se présente pas sur des tests sanguins ou des analyses et est souvent difficile à diagnostiquer.
Kevin Davies, professeur de médecine à l’Université du Sussex et un expert dans la fibromyalgie, a déclaré: « Les gens qui présentent des problèmes vont pour les analyses et les tests sanguins, mais rien ne montre comme il est tout au sujet de la douleur.
« Mais cela ne signifie pas qu’il n’y a pas un problème – il est juste que le médecin ne peut pas faire un diagnostic dont il se sent en sécurité au sujet. »
On pense à environ un million de personnes vivent avec la condition au Royaume-Uni.
La fibromyalgie est reconnue comme condition par NHS Choices en Angleterre et en Ecosse, ce qui signifie des traitements devraient être disponibles pour les patients.
Cependant, dans la pratique, la disponibilité des services est inégale car toutes les fiducies de santé ont les ressources nécessaires pour cibler spécifiquement la condition.
Bien qu’il n’y ait pas de chiffre précis pour l’Irlande du Nord, on pense autour d’un à 25 peut être faire face aux symptômes – la majorité d’entre eux non diagnostiqués.
Louise Skelly, directeur des opérations au patient et au Conseil client, a déclaré: « Ce que nous sommes surpris est combien de patients sont venus en avant, qui veulent partager leurs histoires.
« Ils se sentaient très isolés et très seul et ce que nous avons découvert est que les cliniciens ont également trouvé ce un domaine difficile à travailler dans un environnement qu’ils ont accueilli le partage des connaissances et des informations. »
Les préoccupations prises au sérieux
Sa reconnaissance comme condition sensibilisera de celui-ci auprès du public, mais aussi les professionnels de la santé.
Une fois diagnostiquée, les patients recevront une « voie » qui décrivent les services sont disponibles , y compris des médicaments ou des conseils autour de l’ exercice et des thérapies alternatives.
Louise Skelly a déclaré personnes souffrant de fibromyalgie se sentait très isolé
Selon les patients, la plus grande percée est d’avoir leurs préoccupations pris au sérieux.
Martina Marks n’a pas été diagnostiqué pendant 10 ans.
« Ce fut un très long voyage. Je ne l’avais pas entendu parler et ni eu mon médecin », dit-elle.
« Il était important que je suis un diagnostic, parce que j’avais été en passant par différents traitements, voir différents médecins et rien ne me donnait un soulagement.
« Certains d’entre eux ne comprennent pas la maladie et je pense que nous avons besoin d’une campagne de sensibilisation pour la profession médicale à comprendre la variété des symptômes avec la fibromyalgie et la gravité de celui-ci. »
Bien qu’il n’y ait pas de remède pour la condition, il est prouvé que les changements de style de vie, y compris la relaxation, la chaleur, l’exercice et le régime alimentaire peut faire une différence.
Les cas graves sont traités avec des médicaments.
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