This centre for treating rare diseases in Tamil Nadu is superb
Posted on: 01/Mar/2018 9:34:31 AM
It is known that every last day in the month of February is regarded as ‘Rare diseases day’. It must be noted that this special day was observed for the purpose of creating awareness regarding rare diseases and another reason was to improve access to treatment of people affected with rare diseases.
It is worthy to mention that this rare diseases day was first held on 29th of February in the year 2008 and since then this day has been spoken in high esteem by many.
The superb piece of news is VHS or Voluntary Health Services has joined hands with Mediscan and they have announced the launch of a Centre for Excellence for the diagnosis and treatment of these rare diseases. It is superb that clinical services started at this centre and it includes medical and surgical management plus others like rehabilitation, day care facilities etc.
This centre is unique for the people belonging to the TN state as it caters to multi-organ care that people affected with rare diseases need.
Mr Prasanna Shirol belonging to Indira Gandhi Institute of Child Health shared his thoughts and spoke about how the comprehensive care present at one centre would be simply superb for the patients with rare diseases such as LSD or Thalassemia etc. He explained about the need to have one team to keep check on these patients with rare diseases.
Mr Prasanna Shirol further highlighted that a kid of weight 10 kg would have to spend as much as Rs 30 lakhs to Rs 50 lakhs and that would be very tough. He threw light on the presence of as many as 7000 identified rare diseases and later said out of those just 500 diseases have got FDI approved drugs.
Dr. Sujatha Jagadeesh who is HOD of clinical genetics, Mediscan expressed her views and said rehabilitative care plus full diagnosis would be provided first. She also spoke about how so many of these rare diseases are not treatable and stressed the importance of care and support. She further added that many organisations present would come forward to help in the treatment by funding for the treatment and this would be for the treatable rare diseases.
It must be noted that since the year 2005 a boy named Pranav Kumar has been getting treatment for his gaucher a LSD and his mother Karthika spoke about how this setting up of centre would be of superb use as her son would be able to get more services.
