Public health: Free treatment sought for LSD patients

Experts ask the government to increase allocation for LSDs diagnostic and treatment centres.

LAHORE:

Experts at an awareness raising workshop on Thursday urged the government to provide free of charge diagnostic and treatment facilities for people affected by a rare group of diseases known as lysosomal storage disorder (LSD).

They also demanded that allocation of funds be increased for setting up such facilities, particularly enzyme replacement therapy, a medical procedure that helps manage such diseases.

They were speaking at a workshop at the Children’s Hospital. The seminar was organised by the Pakistan Pediatric Association, the Gastroenterology-Hepatology Group and the Department of Pediatric Gastroenterology-Hepatology. Speakers included Prof Aisha Mehnaz, Prof Akbar Nizamani, Prof Waqar Rabbani, Dr Hani Akbar Rao, Prof Hameed, Prof Dilshad Qureshi, Prof Agha Shabbir and Prof Shazia Maqbool.



Professor Huma Arshad Cheema, a gastroenterologist and hepatologist, said so far the number of LCD cases in Pakistan was low. However, she said, the treatment of these disorders was expensive and was not affordable for most people. She said the government needed to devise a free treatment scheme for people diagnosed with LSDs.

Prof Cheema highlighted the need for improved diagnosis. She said facilities should be provided in hospitals to detect these disorders before child birth.

What are LSDs?

LSDs are a group of genetic disorders caused by defects in cellular enzymes that are required to break down waste products. In a normal person, the waste matter is broken down with the help of enzymes. It is then used for various bodily functions. When defective, enzymes fail to break down the unwanted matter, affecting normal body activity.

Symptoms: LSD symptoms include enlarged liver, spleen, abnormal bone growth, and recurrent chest infections. The appearance of symptom and severity of disease vary according to the type of LSD. Mostly symptoms start appearing amongst children under the age of one.

Diagnostics: Previously, blood samples had to be sent abroad for the diagnosis of LSDs at a cost ranging between Rs12,000 and Rs15,000 per test. Diagnostic facilities are now available in Pakistan as well.

Curable or not? Though LSDs are not curable, people diagnosed with these disorders can lead a normal life with effective treatment of symptoms.

Published in The Express Tribune, February 28^th, 2015.