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Kakaibang sakit sa balat hinahanapan ng lunas

The Azney family moved from Malaysia to Australia to better care for their two children, who suffer from a rare skin condition.

The Azney family moved from Malaysia to Australia to better care for their two children, who suffer from a rare skin condition. Source: SBS

Tinutulungan ngayon ng mga skin expert ang mga Australyano na gamutin ang tinatawag na Epidermolysis Bullosa, isang rare skin disease na nagdudulot ng mga masakit na butlig butlig sa balat.


Published

Updated

By Cassandra Bain

Presented by Claudette Centeno-Calixto

Source: SBS




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Tinutulungan ngayon ng mga skin expert ang mga Australyano na gamutin ang tinatawag na Epidermolysis Bullosa, isang rare skin disease na nagdudulot ng mga masakit na butlig butlig sa balat.


HIGHLIGHTS

  • Mahigit isang libong Australyano ang namumuhay ng may Epidermolysis Bullosa at may mahigit kalahating milyon naman sa buong mundo
  • Patuloy ang mga clinical trial sa Europe at North America kabilang ang Stanford University sa California upang mabigyang lunas ang sintomas ng sakit
  • Bumuo ang University of South Australia ng isang bagong antibody therapy

Ayon kay Lise Angus, general manager ng not-for-profit advocacy group na DEBRA, mahigit isang libong Australyano ang namumuhay ng may Epidermolysis Bullosa at may mahigit kalahating milyon naman sa buong mundo.

"Everybody is working towards it globally, but the cure is a way off so in the meantime it's about ensuring that quality of life is really the best it can be for those living with it. We have three main services that we offer, so we have our in hospital nurses, we have in-home nurses to help with dressings so that parents can just be parents and love their children and not inflict pain."


 

 


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