Narcolepsy and Hypersomnolence are the disorders researched more clearly in medical science. Recently, the explanation is also due to the extensive sleep examination in the recent years. More and more patients receive sleep exam and make a correct diagnosis, then obtain proper treatments. However, narcolepsy and hypersomnolence are still quite unfamiliar to Taiwan. Many of patients, families, classmates, and colleagues do not understand the disorder and that causes misunderstanding. Actually still some medical doctors do not know how to diagnose and treat the Narcolepsy now. Thus delay the treatment of the illness, lead more severe symptoms to the patients, and consequently compromise patients’ quality of life. Moreover, depression, obesity, obstructive sleep apnea and other diseases are comorbid these patients, thus influence the treatment vastly.
The incidence of the disorder is rare and it is only approximately 0.034% base on Hong Kong data. Relatively, treatment is very limited to the patients except Ritalin, and modafinil in Taiwan. If doctor prescribe long-acting and less side effects medication such as modafinil, it takes some times to apply in Taiwan. Therefore, the support system, resource, and information for the patients and families who suffer from narcolepsy and hypersomnolence disorder are limited in Taiwan. As a consequence, the patients and families urge to establish Hypersomnolence and Narcolepsy association after discussion with Dr. Yu-Shu Huang, The purposes of the association, definitely help the patients and their families to get appropriate medical help, and simultaneously promote the understanding to broad society. Moreover, proceed to get more support from government for these patients and to educate more people. In 2014, Dr. Yu-Shu Huang and several enthusiastic physicians discuss with patients and families to establish “Taiwan Hypersomnolence Association”. On January 1st , 2015, we announced patients’ fellowship and a preparatory congress to establish “Taiwan HypersomnolenceAssociation”. Finally, on January 30, 2016, the 1st time membership assembly was established. Meanwhile, we elected the president Dr. Yu-Shu Huang, vice president Dr. Hui-Xiong Wang, and the total sum nine directors and three supervisors.
On August 1st in 2016, we obtained the formal authorization letter to establish “Taiwan HypersomniaAssociation (T.H.A)” from Ministry of the Interior.
The process to establish the association was time consuming and laborious. We thank for the assistance from many patients, families, and association fellowship who participate in association establishment. We do hope the establishment of the association could accomplish our purposes. Integrate and promote the professionalism and research capability above sleep related disorders in Taiwan and to provide the knowledge platform and propaganda of related disorders. Offering the assistance for patients and families in all respects. To help patients of hypersomnolence, narcolepsy and other sleep disorders to seek for early medical treatment and to mitigate the family economic burden. We hope the sustainable operation of the association for good and all to help more people.
President of Taiwan Hypersomnia Association