MY PERSONAL EXPERIENCE OF TB WITH DISABILITIES – NANDITA VENKATESAN

BY FRANCIS OKOYE
Nandita Venkatesan, a 2 times intestinal TB survivor, Journalist, Dancer and living with profound defines has opened up on her personal experience of TB with disabilities.

She spoke at the August 2017 Shanti Devi Memorial health Justice Lecture Series, on the topic “breaking the silence on TB and disabilities”. Nandita, a journalist with economic times, patients right advocate, lost over 90% of her hearing to profound deafness due to a rare side effect of 2nd line TB drug.

Her health problem started when she develop TB, and was on medication for 18 months using first line drugs and was declared cured. The second time she was diagnosed, she had 6 surgeries, was hospitalized for 3 months, had endless nightmare and complications. Her hair was gone, had skin problem, and was between life and death. She had low sugar, memory loss and TB.

On 2013, her 24th Birthday, in less than 10 minutes in the morning of that day, she lost her hearing – this was a side effect of an injection given to her. Doctors did not counsel her before or after hearing loss. She suffered 2 years of depression, her speech was disturbed, she couldn’t speak because of medication they had administered. She had to undergo intensive speech therapy and had huge out of pocket expenses, including selling her house.

According to Nandita, orthodox TB is a very great problem. It had several economic side effects and physcology effects. Opportunities for people with hearing loss are limited. Testimonies of several people who have undergone hearing loss as a result of treatment with drugs abound.

She advocates for adoption of the following measures:
• Prevention – Audiometry (base line/follow up)
• Rehabilitation – Counseling and jobs (ADIP, subsidized Aids, Bridge the information gap and Ototoxility data)
• Check up – all patients using this drug must be informed of the possible side effects and checked for TB hearing loss.
• Precaution – all precautions should be taken before treatment of TB so that such disability should not occur.

Still speaking on disabilities, an expert, Abia Akram, International Disability Right Advocate also had personal experience of physical disability.

According to Akram, out of 17 goals SDGS, 13 are disability related but only 7 have explicit reference to the disability. Woman with disability are asked difficult questions. The interest of disability people should be included in policy making and legislature, some women with disability have committed suicide. How parents and family members are treating them should also be considered.