Yini efanisa isifo njengokungavamile?
Isifo esingavamile senziwa kubantu abangaphansi kuka-200 000 e-United States futhi abangaphansi kuka-5 ngabangu-10 000 abantu base-European Union. Njengoba ungase ucabange, kunezifo ezithile ezithinta kuphela izinombolo ezincane zabantu emhlabeni wonke. Futhi zikhona ezinye izifo eziyinto eyodwa-ye-uhlobo, evame ukukwenzeka ngenxa yesici sezakhi zofuzo.
Ezinye izifo zande ezindaweni ezithile zomhlaba kepha zingavamile kwabanye. Kulinganiselwa ukuthi kunezifo ezingaba ngu-5 000 no-8 000 ezaziwayo ezingavamile emhlabeni.
Ngifuna ukwazi uma isifo esithile kubhekwa singavamile.
Ihhovisi le-US of Rare Diseases liqukethe uhlu lwezifo ezingaphezu kuka-6 000 ezibhekwa njengezivamile e-United States.
Ngidinga ulwazi ngesifo esingavamile.
Ungabheka ulwazi ngolwazi lwe-alphabetically ngegama lesifo. Uma ungamazi igama noma ukuthi ungalipela kanjani, ungabheka izinhlobo zezifo zezifo kule sayithi ukufakwa kuhlu oluhlanganiswe ngohlobo (isibonelo, ukuphazamiseka kwengqondo, izifo zesikhumba, njll).
Ngidinga ulwazi ngesifo esingavamile esingakabhaliswa kusayithi lakho.
Uma ungakwazi ukuthola okudingayo, hlola lezi zingosi:
- E-United States: I-Genetic and Rare Diseases Information Centre, lapho ungaxhumana nomuntu ophilayo ngemibuzo ethile mayelana nesifo sakho.
- E-UK: Xhumana neNkomba Yomndeni Yezimo Ezicacile Nezinkinga Ezivamile
- EYurophu: I-Orphanet - ifinyeleleka ngezilimi ezingu-6: isiNgisi, isiFulentshi, isiJalimane, isiNtaliyane, iSpanishi nesiPutukezi.
Ngingawuthola kanjani iqembu lokusekela ngesifo noma isifo esithile?
Okokuqala, bheka i-athikili mayelana nesifo esakhiweni. Ungabheka izinhlobo zezifo zezifo kuleli sayithi ukuze uhlaliswe uma ungazi igama le-disorder.
Lesi sihloko sizoqukatha isixhumanisi samaqembu asekelayo. Uma kungakabi khona isihloko mayelana nesifo, zama ikhasi lezinsizakalo ze-Support Groups, ezixhumanisa namaqembu ahlukahlukene asekela ama-US nezindawo ezingajwayelekile zezifo.