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Regional Managers Organise LSD Patient Meeting In Kathmandu

9 September 2019

This weekend, our regional managers Suyog Sathe and Shashank Tyagi continued their medical programme in Nepal with Dr Ashok Vellodi, visiting Thamel in Kathmandu for a patient meeting.

Two families identified with Lysosomal Storage Disorders were invited by the IGA: Sajan, a 21-month-old baby diagnosed with Niemann-Pick disease and 6 year-old Neev, diagnosed with Hunters syndrome.

Both families shared the challenges they have faced: getting diagnosed; problems with follow-up tests; getting proper treatment and finding qualified doctors in Nepal.

Sajan’s family have already lost one child 3 years ago and so they visited their doctor for pre-natal diagnosis.  Unfortunately, the report was incorrect and Sajan was born with NP – the family lost all trust and hope in their doctors for not giving an accurate diagnosis.

Neev’s father told how he just wanted his child to have treatment because he cannot bear to see him.  He was diagnosed 5 years ago and has seen many doctors but has been unable to find treatment.

These photos show: Sajan with his mother and Dr Vellodi; and Neev with his father, Suyog, Dr Vellodi and Shashank.