Kodi n'chiyani chimakwaniritsa matenda ngati osavuta?
Nthenda yosaoneka imapezeka pakati pa anthu oposa 200,000 ku United States ndipo osachepera 5 pa anthu 10,000 ali mu European Union. Monga mukuganiza, pali matenda ena omwe amakhudza anthu ang'onoang'ono padziko lapansi. Ndipo palinso matenda omwe ali a mtundu umodzi, kawirikawiri amachitika chifukwa cha vuto la chibadwa.
Matenda ena amapezeka m'madera ena padziko lapansi koma amalephera. Zikuoneka kuti pali pakati pa 5,000 ndi 8,000 matenda odziwika kwambiri padziko lapansi.
Ndikufuna kudziwa ngati matenda ena amawoneka kuti ndi osowa.
Ofesi ya US of Rare Diseases ili ndi mndandanda wa matenda oposa 6,000 omwe amawoneka kuti ndi osowa ku United States.
Ndikufuna kudziwa zambiri pa matenda osowa.
Mukhoza kuyang'ana mndandanda wa zilembo zamalonda ndi dzina la matenda. Ngati simukudziŵa dzina kapena momwe mungazigwiritsire ntchito, mukhoza kuyang'ana pa tsamba la matenda pa tsamba ili pamndandanda womwe umagwiridwa ndi mtundu (mwachitsanzo, matenda a ubongo, matenda a khungu, etc.).
Ndikufuna chidziwitso pa matenda osadziwika omwe sanalembedwe pa tsamba lanu.
Ngati simungapeze zomwe mukufuna, fufuzani masamba awa:
- Ku United States: Malo Odziwitsa Odwala Amtundu wa Genetic ndi Odwala, komwe mungapeze munthu wamoyo ali ndi mafunso okhudza matenda anu.
- Ku UK: Lembani Chiwerengero cha Banja cha Mkhalidwe Weniweni ndi Matenda Ovuta
- Ku Ulaya: Orphanet - kupezeka m'zinenero 6: English, French, German, Italian, Spanish and Portuguese.
Kodi ndingapeze bwanji gulu lothandizira matenda ena kapena matenda?
Choyamba, fufuzani nkhani yokhudza matendawa pa tsamba. Mukhoza kuyang'ana pa tsamba la matenda pa tsamba ili kuti mupeze mndandanda ngati simudziwa dzina la matendawa.
Nkhaniyi idzakhala ndi mgwirizano wothandizira magulu. Ngati palibe nkhani yokhudza vutoli, yesani tsamba la Support Groups resources, lomwe limagwirizanitsa magulu osiyanasiyana othandizira matenda a US ndi ochokera m'mayiko osiyanasiyana.