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Get-hooked July 18, 2019
#RareDiseases - Poor awareness & support among the challenges people with Sturge-Weber syndrome face in India
In our July campaign #RareDiseases, this week we look at a Sturge-Weber syndrome. Present at birth, it is regarded as a spectrum of diseases which may affect either the eyes, skin and brain, or all three systems.
“No doctor in Delhi had seen a baby with this condition”, says Geetha Narayanswamy recalling the birth of her son in 1998. Vinayak, her second child, was born with a rare disorder called Sturge Weber syndrome (SWs).
It was only after a neonatologist who had worked in hospitals in the West saw Vinayak that Geetha and her husbandRead more on #RareDiseases - Poor awareness & support among the challenges people with Sturge-Weber syndrome face in India
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