This is massive especially when the disability is permanent. So it all started with a near fatal car accident on 4th August 2017, before this my life was quite picture perfect. The accident affected my husband, my 2 and half years old daughter and of course me. On 5th August 2017, my dear husband was sitting in the nearest hospital, with my daughter crying for food (he couldn’t feed her as docs said she had a small blood clot in the head) and me unconscious. This was also our wedding anniversary day !! From here began the loop of hospitalisations and outflow of all our savings. Between August 2017 and June 2018 I had to be hospitalised 6 times, each time the bill was 1.5 lakhs!!! But there was no proper diagnosis. Just steroids. We even had to sell our dream house to cope up with the financial stress. And all this was in renowned private hospitals. Then came NIMHANS, a government hospital in Bengaluru, where not only did I get the right diagnosis and treatment but also the cost was low. I was in NIMHANS for 17 days and the bill was a mere 50000 INR as compared to the 1.5lakh bills I got at private hospitals for 3 days. Then came the daily physiotherapy at Sakra World Hospital, INR 2200 daily for a whole year.
Now you may ask what was the need for so many hospitalisations. The answer is rather simple:
1. In all private hospitals there was no accurate diagnosis
2. My medical condition was a rare combination of neurological and post traumatic genetic condition
3. The private hospitals didn’t have the research background that NIMHANS, Bangalore had
4. In this cocktail of medical conditions physiotherapy is an absolute must
My family and I had absolutely no idea about the benefits of patient advocacy and research based clinical trial information that I later learnt from my dear friend Nisha Venugopal and Indo US Organization for Rare Diseases (IndoUSrare).
So food for thought – when in such a situation always try and reach out to your network, who knows you might be lucky and reach the right diagnosis and treatment faster than I did. Special mention for my physiotherapist Niraj Kumar, who still treats me and his vision is to make me run one day!!! I am sure my dear friend Akhil Kuduvalli Ramesh will have some thoughts to share.
Contributed by
Aritra Bandyopadhyay
Member, APNA
