allAfrica.com: Africa: The Plight of the Disabled HIV/Aids Patients (Page 1 of 2)

Eye complications is a rising issue affecting people living with HIV. Despite the growing international attention to desisabled people's rights, African governments and Aids policy makers rarely consider disability issues when formulating their strategic plans, writes Bamuturaki Musinguzi

For fear of the stigma, discrimination and pointing fingers that usually come with HIV/Aids she decided to live in denial for ten years - a decision that eventually contributed to her blindness.

Christine Kyaterekera says: "I do not regret living in denial," adding: "I feared going to hospital. I do not know whether I was afraid of knowing the truth, but I feared discrimination if people knew I had got HIV/Aids. I lived in self denial for ten years."

Kyaterekera, who has lived with HIV for 17 years, says that with the self denial and no treatment, blisters and a dry cough intensified. She only got relief after her family decided she had to go for HIV testing. "On December 31, 2000 we held a family meeting and my children resolved that I go for HIV testing, which proved I was HIV positive and diagnosed with TB in January 2001. I took TB drugs for eight months and I recovered."

Talking to Daily Monitor at the sidelines of the second Meeting of the Africa Campaign on Disability and HIV and Aids in Kampala, Kyaterekera, who has gone public about her status recalls that in early 2002 she started to get en eye problem. "I went to hospital and the health workers claimed it was an allergy caused by the drugs I was taking or HIV. It is then that my husband got very sick and re-infected me with TB. I was put on TB treatment again, but my eye pain persisted."

"On April 1, 2003 I woke up only to realise that my left eye had gone blind. I went to hospital and the doctor told me that once the virus gets to the eyes they don't easily recover," Kyaterekera recalls.

"By then, the right eye was dimming-up because I could see someone's face only. I was then advised to start on ARVs. Unfortunately my right eye never recovered and I got very ill in May 2003 that came with a mental problem for six months. I don't recall what happened in this period. My husband's death came in November 2003."

Kyaterekera, the 49-year-old widow and mother of seven later joined the NGO, Blind But Able (BBA) where she has learnt to use the cane, knitting and Braille.

"My biggest challenge was to get used to my blind status and how to look after my young children, who were traumatised. Though I have now got used to my disability my experience is that whenever parents get HIV, it's the children that suffer most with people pointing fingers at them saying 'Your mother has HIV'. My neighbours discourage their children from playing with mine for falsely fearing being infected. But no one has pointed fingers at them due to my blindness."

According to World Health Organisation (WHO), nearly 34 million people are currently living with HIV/Aids worldwide and ocular complications are common, affecting 50 percent to 75 percent of all such patients at some point during the course of their illness. Cytomegalovirus retinitis is by far the most frequent cause of vision loss in patients with Aids.

"Although the prevalence of cytomegalovirus retinitis is decreasing in industrialised countries because of the widespread availability of highly active antiretroviral therapy, between 10 percent and 20 percent of HIV infected patients worldwide can be expected to lose vision in one or both eyes as a result of ocular cytomegalovirus infection," Philippe G. Kestelyn and Emmett T. Cunningham Jr, wrote in a paper titled, HIV/Aids and Blindness published in the WHO Bulletin in 2001.

"Less frequent but important causes of bilateral vision loss in-patients with HIV/Aids include varicella zoster virus and herpes simplex virus retinitis, HIV-related ischaemic microvasculopathy, ocular syphilis, ocular tuberculosis, cryptococcal meningitis, and ocular toxic or allergic drug reactions," Kestelyn and Cunningham Jr, added. "At present, most patients with HIV/Aids in developing countries who lose their vision have a very limited life expectancy.

As antiretroviral therapy makes its way to these countries however, both life expectancy and the prevalence of blindness related to HIV/Aids can be expected to increase dramatically," they warn.

Although Kyaterekera is on ARV treatment through The Aids Support Organisation (Taso), eighty million people are being excluded from the fight against HIV and Aids in Africa simply because they are disabled.

They make up a large proportion of people in the poorest communities, which are also severely affected by HIV and Aids. Despite their exclusion, persons with disabilities (PWDs) are both willing and able to positively contribute to the response to the pandemic. The Uganda Aids Commission does not have disaggregated figures to do with PWDs and HIV/Aids.

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