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Thursday, March 24, 2016

Tuberculosis Made Me Blind, But We Can Make Sure No One Else Needs to Suffer Like I Did



I've been blind for 9 years because of tuberculosis. I lost my sight, my budding career in architecture, many of my friends and huge part of what I used to do in this life. I still dream that one day, I'll be able to see my 3-year old daughter.

I remember the first time I heard that I had tuberculosis (TB). I felt very disgusted with my body because in the Philippines, where I live, it was popularly known to be an illness of the poor: the jeepney drivers that cough non-stop, the cigarette vendors on the street who spit on the sidewalks and the families who live in informal housing. I'm sure my relatives and friends thought of the same thing. Maybe this is also the reason why Filipinos would rather not talk about the disease. Maybe this is also why it's still so hard to treat people, find those who are affected and effectively eradicate this disease in my country and others.

Diagnosis was very primitive back in 2007 when I contracted TB. The longer the bacteria stays in the body, the faster it spreads. Nobody knew there was TB treatment available in the first hospital I was rushed to and the doctors did not know how to deal with TB properly. I was labeled a 'terminal case', and my parents were advised to get a priest to bless me for my remaining hours.

My treatment was like a horrible dream. I remember during my confinement after I was finally diagnosed with a case of TB meningitis (where the TB had spread to my brain), how I wasn't able to move because of a mild stroke and partial paralysis. Nurses would take turns to carry me to the bath and to the wheelchair and to feed me. I slowly lost my vision.

Because of improper dosage and prescriptions, my TB eventually became resistant to the drugs and I developed multi-drug resistant TB (MDR-TB) after six months of unsuccessful treatment. I lost my vision permanently.

Finally, I was enrolled in a program run by an organization that received a grant from The Global Fund to Fights AIDS, Tuberculosis and Malaria (the Global Fund). It saved my life. The doctors there were well-trained in TB and I was provided free treatment - MDR-TB drugs cost up to 200 times more than regular TB drugs, a cost that few families can afford.

MDR-TB treatment lasts for 24 months and is not easy at all. I took more than a dozen of capsules and tablets a day and got injections for months; it made me feel like my brain was always on a circus ride. My location from the treatment center was far, so I was lucky that the Global Fund started to introduce decentralized TB centers across the country. This took away a lot of stress and made the daily gulp of pills more manageable: it's difficult for patients to stick to this lengthy treatment with all its side-effects without this kind of support.

After my recovery and after I had accepted my disability, I decided to move forward with my life. I obtained an M.A. International Affairs in Comparative and International Disability Policy which helped me understand the international conversations around disability and started my collaboration with the movers and service providers in the TB epidemic. I have undertaken numerous advocacy efforts in my country and worldwide for this disease, but I'm just one person. Patients need support and a space for a stronger voice. Together, we call for new drugs, the improved delivery of medicines and a say in the research process, which will mean fewer months of treatment, less disabilities, healthier patients, happier families and better economies. No other mother should not be able to see her children because of TB.

Almost half of all TB cases in my region go undiagnosed because of lack of access to quality care and facilities and the stigma around TB. This causes the disease to spread and, if these cases turn into MDR-TB like mine, they create a huge cost to our country and society. If the Global Fund, which has helped me and 15 million other TB patients around the world, can continue in its work and be funded by donor governments with the USD$13 billion it needs in its next replenishment happening later this year, we can continue with the successful interventions it has put in place in countries like the Philippines. It can introduce new, more effective diagnosis machines like Gene Xpert across the country and assist in providing better medication for more patients.

I may not design architectural structures anymore, but I can help design healthier lives. I hope that with more funding and support, we can all see an end to the global TB epidemic in the next few decades with zero deaths, zero disease and zero suffering due to TB.



This post is part of the 'The Isolation of Airborne Cancer' series produced by The Huffington Post for World TB Day. This series will look at the devastating issues surrounding tuberculosis, the number one infectious killer. To follow the conversation on Twitter, view #WorldTBDay.

Read More:
139 days of isolation: What it's like living with Tuberculosis
'Make it stop': The tender casualties of drug-resistant Tuberculosis
UN special envoy on Tuberculosis: Giving voice to the voiceless
Do or die: 6 reasons why it's critical to invest in the deadliest disease you probably never think about

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