Parents in the city whose children are suffering from rare diseases will come together to raise awareness of uncommon disorders and conditions through a run and walkathon on Sunday at Dadar.
Dubbed ‘Race For 7’, the event will mark the Rare Disease Day, which is observed on February 28. It is being held by the Organization For Rare Diseases India (ORDI), a group working to address the challenges of patients with atypical diseases and their families in the country.
A rare disease, which could affect as few as one in a million people, goes undiagnosed most of the time. Once detected, though, it could save the patient’s life.
The event hopes to help people understand such diseases better, in order to empower patients and their families and open up the pool of national and international resources for them.
The walkathon and race will commence at Dadar, near Mancherji Joshi Panch Udyan (Five Gardens), at 6.30 am. The event will also see a discussion by an expert panel from the medical field.
Sheetal Bhatkar, state coordinator, ORDI, said, “More than 1000 people including doctors are expected to participate in this event.”
Bhatkar lost her son to Niemann-Pick disease in 2015, when he was seven. “We came to know there was no treatment available in the country for the disease he was suffering from. There are medicines available abroad, but 90 tablets cost Rs 5 lakh. One has to take those medicines throughout the life to survive.”
Dr Sahana Vaidya, another parent whose child has a rare disease, said, “My daughter was diagnosed with Cushing syndrome, a rare endocrine disorder caused by abnormally excessive amounts of the hormone cortisol. It took five months for us to realise what was wrong. I am a doctor and I have yet to learn a lot. Imagine how difficult it would be for a layman to know of such a disease.”
https://www.dnaindia.com/mumbai/report-mumbai-run-to-raise-awareness-of-rare-diseases-2721196
