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1.
Pain Ther ; 13(2): 201-210, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38280147

RESUMO

The scale of migraine and its impact on the lives of patients in the Gulf Cooperation Council (GCC) countries may be underestimated by healthcare professionals and the public and unmet needs in the provision of migraine medical care may exist. This article reports the key outcomes from a meeting of migraine specialists and their patients organised by the Emirates Neurology Society to learn more about the patient diagnosis and treatment journey and the extent to which migraine affects daily life. Patient stories indicate that the burden of migraine is underestimated, migraine is not generally recognised as a disease, delayed and incorrect diagnoses are common, and that achieving symptom control is often more a question of good luck rather than good management. Disease awareness campaigns are recommended to elevate societal understanding of migraine and reduce stigma toward patients affected by migraine. Recommendations for an improved healthcare system experience for patients affected by migraine include education initiatives targeting patients and physicians as well as initiatives to address gaps in the diagnosis and treatment of migraine.

2.
J Neuromuscul Dis ; 9(5): 661-673, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35754286

RESUMO

Pompe disease is a rare, metabolic, autosomal recessive disorder. Early diagnosis is critical for progressive Pompe disease as delays can significantly alter the clinical course of the disease. Diagnostic modalities, including dried blood spot testing and genetic testing, are available and are effective for diagnosing patients with late-onset Pompe disease (LOPD). However, clinicians face numerous clinical challenges related to the diagnosis of the disease. Two expert group committee meetings, involving 11 experts from the United Arab Emirates, Kuwait, the Kingdom of Saudi Arabia, and Oman, were convened in October 2019 and November 2020 respectively to develop a uniform diagnostic algorithm for the diagnosis of pediatric and adult LOPD in the Arabian Peninsula region. During the first meeting, the specialty-specific clinical presentation of LOPD was defined. During the second meeting, a diagnostic algorithm was developed after a thorough validation of clinical presentation or symptoms, which was performed with the aid of existing literature and expert judgement. A consensus was reached on the diagnostic algorithm for field specialists, such as neurologists, rheumatologists, general practitioners/internal medicine specialists, orthopedic specialists, and pulmonologists. This specialty-specific diagnostic referral algorithm for pediatric and adult LOPD will guide clinicians in the differential diagnosis of LOPD.


Assuntos
Doença de Depósito de Glicogênio Tipo II , Adulto , Criança , Consenso , Doença de Depósito de Glicogênio Tipo II/diagnóstico , Processos Grupais , Humanos
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