Manjulatha Behera walks into our office in Puri in the Indian state of Odisha and her bright yellow sari instantly brightens the room. She is tall and graceful and although she smiles you can see that she is shy and embarrassed to tell her story.
She becomes more at ease as she tells us about her three children, two daughters and a son, and about her village of Matiapada. Rare and extremely unfair, Manjulatha is affected by both lymphatic filariasis (LF) and leprosy. She carries the burden and the debilitating effects of both of these neglected diseases and battles to keep them from affecting her life further.
Manjulatha tells us that 15 years ago her glands began to swell and that was when she was diagnosed with LF in a private nursing home. She was hospitalised for nine days and put on medication and injections to reduce the swelling and ease the fevers brought on by the disease.
“The doctor told me to take treatment every two months and then stop. I stopped all treatment after two years.”
Every time her legs would swell, sometimes twice a month or at times twice a week, she would have to find a way to buy the prescribed medicine from the chemist. Given that the family lives below the poverty line this was a constant struggle.
As if the burden of being affected by LF wasn’t enough, Manjulatha’s feet lost all their feeling seven years later. This was when she was diagnosed with leprosy and began taking multi-drug therapy from the community health centre to cure the disease. While this dispelled the disease from her body, unfortunately her feet would never regain their sensation.
Unable to feel anything, she is more prone to cuts and burns which create ulcers. We have been able to provide her with an ulcer care kit to help her in keeping those wounds clean and we’ve also taught Manjulatha how to perform self-care techniques. Together these keep the swelling from LF at a minimum and prevent the ulcers caused by leprosy symptoms from becoming infected.
Manjulatha has also joined one of our self-support groups where she meets with others affected by LF. Here she can learn new skills, advocate for benefits and talk to others who have endured similar experiences. She also receives a pair of our protective shoes every few months.
Manjulatha says she likes attending the group meetings because she doesn’t feel she is treated any differently since the other group members are also affected with LF but she keeps her leprosy diagnosis a secret. She worries that should people discover that she has been affected by that too, she’ll be treated differently and outcast by her community.
It doesn’t help that her mother-in-law constantly tells her she is cursed which, although Manjulatha would like to ignore, is something which troubles her despite knowing that leprosy is a real and curable disease.
“I was ignorant about leprosy but through Lepra’s intervention I came to know more about the disease.”
Although she has completed the multi-drug therapy and is infection-free, Manjulatha still worries that the disease will impact the future of her daughters’ marriages. She believes that if her diagnosis should become public knowledge they won’t be able to find prospective husbands to provide for them.
For Manjulatha both diseases have brought with them an enormous expense, physically, financially and emotionally. While she’s doing all she can to take better care of herself and accessing our help to do so, there’s no stopping her worrying and the shame she feels at having not one, but two debilitating diseases.
To help others like Manjulatha access the care they need to help them overcome neglected diseases, donate now.