‘I contracted tuberculosis at 25 and lost my sight’

Louie at Parliament House advocating for more effective TB vaccines, diagnostics and treatment.

SBS News 24 March 2015

By Chief Political Correspondent Catherine McGrath

After contracting tuberculosis at 25 and losing her sight, Elouisa ‘Louie’ Zepeda has now become a disability advisor and health advocate calling for more funding to fight the highly contagious disease.

Elouisa “Louie” Zepeda was a qualified architect living in Manila when she contracted tuberculosis in 2006. She was 25.

Due to delayed diagnosis and the fact she contracted multi-drug resistant TB, Ms Zepeda ended up losing her sight.

“It was like a movie, a horrible movie. The loss of sight happened in the first weeks,” she told SBS during her visit to Canberra. “I would have saved my sight if they had diagnosed me properly.”

She received treatment for two years, and was initially told the blindness would be temporary. Her life was changed when she discovered her loss of vision was permanent.

“I wanted to strangle the doctor, only I couldn’t move,” she said.

TB kills 1.2 billion people a year. Fifty-six per cent of all new cases are in South East Asia and the Western Pacific.

Last year the first cases appeared in the Torres Strait transmitted through contact with people from Papua New Guinea.

TB is very difficult to treat. The drugs used to fight it are not always effective, extremely toxic, and have many side effects.

For Ms Zepeda blindness was one, but she also suffered severe depression, partial paralysis, muscle spasms and more.

Once she had beaten the disease Ms Zepeda said she knew she should move on but she was drawn to policy work in the health area. She studied for a Master’s Degree in public policy and is now a disability advisor for universities and an advocate for the fight against tuberculosis.

“I knew after the treatment I would be worthless because I couldn’t go back to my original job. So I looked for ways to find my reason for living so I went to the disability sector and I saw more horrible stories than mine.”

The Australian Government used World TB Day to announce $30 million dollars to assist the fight against TB. Foreign Minister Julie Bishop described it as a true health crisis.

The announcement of the funds was welcomed by Ms Zepeda and other TB policy advocates.

“Hearing the Minister’s good news I thank the Australian Government for helping to eradicate this disease” she said.

“I believe the funds will go to the places they are supposed to go to. Improvement of vaccines, because it didn’t work for me. For improvements in diagnostic procedures so that irreversible procedure don’t happen to anyone again.”

Original article (video expired)