Kajeno TSC Alliance® e thoholetsa tumello ea US Food and Drug Administration's (FDA's) ea HYFTOR™, e leng phekolo ea pele e amohetsoeng ke FDA bakeng sa angiofibromas ea sefahleho ho batho ba baholo le bana ba lilemo tse tšeletseng kapa ho feta ba nang le tuberous sclerosis complex (TSC) . HYFTOR™, e entsoeng ke Nobelpharma America, LLC, e na le Orphan Drug Status bakeng sa pontšo ena.
Kari Luther Rosbeck, Mopresidente le CEO oa TSC Alliance, o itse: "TSC Alliance e amohela khetho ena ea kalafo bakeng sa angiofibromas. “Kaha hangata li ama chebahalo ea motho ’me li ka baka mali, phekolo ena e na le monyetla oa ho fokotsa e le kannete phello ea pontšo ena ho batho ba baholo le bana ba nang le TSC. Re leboha boitlamo ba Nobelpharma ho sechaba sa TSC.
TSC ke lefu le sa tloaelehang la liphatsa tsa lefutso le etsang hore lihlahala tse se nang mofetše li thehe holim'a kapa lithong tsa bohlokoa, ho kenyeletsoa letlalo. Angiofibromas e bakoang ke TSC ke likotola tse nyenyane tse atisang ho hasana sefahlehong se bohareng, haholo-holo nkong le marameng, 'me hangata li kopane ka li-grooves lehlakoreng la nko. Angiofibromas hangata e nyane ho feta peppercorn, empa e ka hola ho feta. E ka ba 'mala oa letlalo, pinki kapa khubelu. Angiofibromas e fumanoa ho bongata ba batho ba nang le TSC ho feta lilemo tse 5 mme ba ka tsoa mali habonolo. Li ka boela tsa ba le litlamorao tse mpe ponahalong le boitšepong, tsa susumetsa batho ba bang ba nang le TSC ho qoba maemo a sechaba.
"Sebokeng sa TSC Alliance sa 2017 se etelletsoeng ka ntle ho bakuli ba nts'etsopele ea lithethefatsi, re utloile ka kotloloho ho batho ba nang le TSC hore na kotsi ea ho tsoa mali sefahlehong e sitisitse bokhoni ba bona ba ho kenya letsoho lipapaling tse mafolofolo," ho boletse Steven L. Robeds, PhD, Ofisiri e ka Sehloohong ea Saense. TSC Alliance, "Re tšepa hore sehlahisoa sena se tla thusa batho ba bangata ho phela bophelo bo botle le bo thabileng haholoanyane."
SEO U LOKELANG HO SE NKA HO SEHLOOHO ENA:
- 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).
