Namhlanje i-TSC Alliance® iyayiqhwabela izandla i-US Food and Drug Administration's (i-FDA's) imvume ye-HYFTOR™, lolona nyango lokuqala olwamkelwe yi-FDA lwe-angiofibromas yobuso kubantu abadala nakubantwana abaneminyaka emithandathu ubudala nangaphezulu abane-tuberous sclerosis complex (TSC) . I-HYFTOR™, eyenziwe nguNobelpharma America, LLC, ineSimo seNkedama seDrugs kolu phawu.
"I-TSC Alliance iyalwamkela olu khetho lonyango lwe-angiofibromas," utshilo uKari Luther Rosbeck, uMongameli kunye ne-CEO ye-TSC Alliance. “Ekubeni zihlala zichaphazela inkangeleko yomntu kwaye zinokubangela ukopha, olu nyango lunamandla okunciphisa ngokwenene impembelelo yoku kubonakaliswa kubantu abadala nakubantwana abane-TSC. Sibulela ukuzinikela kukaNobelpharma kuluntu lweTSC.”
I-TSC sisifo esinqabileyo sofuzo esibangela ukuba amathumba angenawo umhlaza enze okanye kumalungu abalulekileyo, kuquka ulusu. I-Angiofibromas ebangelwa yi-TSC ngamaqhuma amancinci adla ngokusasazwa kumbindi wobuso, ngakumbi empumlweni nasezidleleni, kwaye ahlala adityaniswa kwimingxunya esecaleni lempumlo. I-Angiofibromas ngokuqhelekileyo incinci kune-peppercorn, kodwa inokukhula ibe nkulu. Zisenombala wolusu, zipinki okanye zibomvu. I-Angiofibromas ifunyanwa kuninzi lwabantu abane-TSC ngaphezulu kweminyaka emi-5 kwaye inokopha ngokulula. Banokuba neziphumo ezibi kwinkangeleko kunye nomfanekiso wobuqu, ukukhuthaza abanye abantu abane-TSC ukuba baphephe iimeko zentlalo.
"Kwintlanganiso ye-TSC Alliance's 2017 External-Led Patient-Focused Drug Development, sava ngokuthe ngqo kubantu abane-TSC ukuba ingozi yokopha ebusweni iphazamise njani amandla abo okuthatha inxaxheba kwimidlalo esebenzayo," utshilo uSteven L. Robards, PhD, iGosa eliyiNtloko lezeNzululwazi. I-TSC Alliance, "Sinethemba lokuba le mveliso iya kunceda abantu abaninzi baphile ubomi obunempilo kunye nolonwabo ngakumbi."
INTO ONOKUYITHATHA KWELI NQAKU:
- 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).
