Masiku ano a TSC Alliance® ikuyamika chivomerezo cha US Food and Drug Administration's (FDA) cha HYFTOR™, chomwe ndi chithandizo choyambirira chovomerezedwa ndi FDA cha angiofibromas pamaso mwa akulu ndi ana azaka zisanu ndi chimodzi kapena kuposerapo omwe ali ndi tuberous sclerosis complex (TSC) . HYFTOR™, yopangidwa ndi Nobelpharma America, LLC, ili ndi Orphan Drug Status pachiwonetserochi.
"TSC Alliance ikulandila chithandizo chamankhwala cha angiofibromas," atero a Kari Luther Rosbeck, Purezidenti & CEO wa TSC Alliance. "Popeza nthawi zambiri zimakhudza maonekedwe a munthu ndipo zimatha kutulutsa magazi, chithandizochi chimakhala ndi mphamvu yochepetsera zotsatira za chiwonetserochi kwa akuluakulu ndi ana omwe ali ndi TSC. Ndife othokoza chifukwa cha kudzipereka kwa Nobelpharma ku gulu la TSC. "
TSC ndi matenda osowa chibadwa omwe amachititsa kuti zotupa zopanda khansa zipangidwe pa ziwalo zofunika kwambiri, kuphatikizapo khungu. Angiofibromas oyambitsidwa ndi TSC ndi tokhala ting'onoting'ono nthawi zambiri timabalalika pankhope yapakati, makamaka pamphuno ndi masaya, ndipo nthawi zambiri amakhala m'mitsempha m'mbali mwa mphuno. Angiofibromas nthawi zambiri ndi yaying'ono kuposa peppercorn, koma imatha kukula. Atha kukhala akhungu, pinki kapena ofiira. Angiofibromas amapezeka mwa anthu ambiri omwe ali ndi TSC opitilira zaka 5 ndipo amatha kutulutsa magazi mosavuta. Atha kukhalanso ndi zotsatira zoyipa pamawonekedwe komanso kudziwonera, zomwe zimapangitsa anthu ena omwe ali ndi TSC kupewa kucheza nawo.
"Pamsonkhano wa TSC Alliance's 2017 External-Led Patient-Focused Drug Development, tidamva mwachindunji kuchokera kwa anthu omwe ali ndi TSC momwe chiwopsezo cha kutaya magazi kumaso chimalepheretsa kuthekera kwawo kuchita nawo masewera olimbitsa thupi," atero a Steven L. Robeds, PhD, Chief Scientific Officer wa TSC Alliance, "Tikukhulupirira kuti mankhwalawa athandiza anthu ambiri kukhala athanzi komanso osangalala."
ZOMWE MUNGACHITE PA NKHANIYI:
- Angiofibromas caused by TSC are small bumps usually scattered on the central face, especially on the nose and cheeks, and are often clustered in the grooves at the side of the nose.
- “Since they often affect someone’s appearance and can cause bleeding, this treatment has the potential to truly reduce the impact of this manifestation on adults and children with TSC.
- Food and Drug Administration’s (FDA’s) approval of HYFTOR™, which is the first FDA-approved topical treatment for facial angiofibromas in adults and children six years of age or older who have tuberous sclerosis complex (TSC).
