For children with rare diseases, every day is a battle against several odds, and their parents have to learn how to deal with their needs and make every effort to provide them with a regular upbringing.
Surekha Ramachandran, the president of Down Syndrome Federation of India, also attests to the fact that caring for children with multiple disabilities is a challenging experience and she speaks from personal experience because her own daughter was born with multiple challenges.
This year, Healthcare provider Voluntary Health Services (VHS) along with launched a Centre of Excellence (CoE) dedicated to the diagnosis and treatment of rare diseases in Chennai.
According to S Suresh, the secretary of VHS, “The centre will be a one-stop centre to offer multispecialty facilities with doctors coming to the hospital to treat children with rare diseases.” The centre is the first of its kind in Tamil Nadu to cater to the multi-organ care that is required by persons who suffer from rare diseases.
The Institute of Child Health, which is also located in Chennai, observed the day and implemented a continuing medical education programme. Around 32 children here have been identified with having lysosomal storage disease, a chronic disorder, in the past one year.
Lysosomal storage diseases (LSDs) are primarily caused by dysfunctional enzymes, and severely affect the quality of life of the patients. Fortunately, treatment is available for some of the LSDs, and can significantly improve the condition of the patients.
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