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A day in the life of a patient suffering from Onchocerciasis (river blindness)

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I was completely disheartened when the doctor told me I was suffering from Onchocerciasis (river blindness). I knew instantly what was in store for me when I heard the name of this disease because some of my friends are already suffering from it since a few months.

There is an epidemic of sort of this disease in our area. I am worried how this disease will progress and hope it does not cause serious complications that my finds have developed. This infection is already causing several disturbing symptoms due to which my routine life has undergone a sea of change. Let me explain the changes this disease has caused in my day to day life:

Waking up in the morning

I was no stranger to Onchocerciasis sympthoms. I knew this disease would affect my eyes and skin. However, I had no idea that it would affect me so severely that it would disturb my daily life starting from the time I get up. I am not getting proper sleep since this infection struck me due to the severe itching and skin rashes. I often get up feeling drowsy and unrefreshed. It has also affected my vision to some extent.

I have to be careful while walking around in my house. So, I try to be in bed till all others in my family have completed their morning rituals. Once they are done with their routine activities, they can help me with my activities.

Starting the day

The severe itching does not let me do any work in peace. I have also developed tiny eruptions on my skin. The doctor has asked me to keep my skin very clean, in order to keep the symphoms at a low level. He has specifically instructed to ensure the skin folds such as the axilla and groin regions are thoroughly cleaned and dried after taking a bath.

I am taking care to avoid worsening of the skin symptoms. However, it makes me very sad when I look at my skin that was once very healthy and clean. It is no more that beautiful. The all I can see on my skin now is nodules, papules, rashes, and scars!

Breakfast, lunch, and dinner

I start eating food only after someone has checked the contents in my plate well. My vision has become very dim. Perhaps, that is why, Onchocerciasis is also called river blindness. I am unable to distinguish between colors, especially green and red.

So, I sometimes have no cue of what I am putting in my mouth until I start chewing it. My family members are taking great care to ensure I eat healthy and hygienic foods. This is an important aspect of the treatment of onchocerciasis. It will keep up my general health and help me recover faster.

Going to work and taking medications

The doctor has advised me against traveling or going to work. Since onchocerciasis has affected my vision and even caused color blindness, it would be wiser to stay at the safety of home to avoid accidents while traveling.
The doctor has also advised me to take medications regularly. He has prescribed me an anti-parasitic drug, Ivermectin.

It kills the parasites and prevents them from causing further damage to my eyes and skin. However, the problem is Ivermectin kills only the larvae and not the adult worms. So, the doctor has added another drug to my treatment regime, Doxycycline. Hopefully, the combination of these 2 drugs will help me recovery from river blindness faster.

Prevention of complications

Unfortunately, there is no vaccine to prevent onchocerciasis. Hence, it is hard to prevent this infection. However, the doctor has assured me that following some precautionary measure will definitely help me avoid the complications of onchocerciasis.

He has advised me to take the medications regularly, and eat a healthy, nutritious diet. He has also advised me to eat the foods having a high amount of vitamin A since this nutrient is known to improve the vision.

What are the daily limitations and what are the fears?

The severe itching I get in my eyes and skin is due to the death of worms. It produces a highly toxic effect on the skin and eyes due to which I have developed terrible itching, scarring, nodule formation on the skin as well as various eye manifestations.

The dimness of vision has restricted my routine life considerably. I cannot go out of the house alone. I have even stopped going for a walk or movies with my friends. I fear these lesions may become worse and cause irreversible blindness. If this happens, I will be left disabled for my entire life! The skin lesions can also become worse and cause a peculiar form of disfigurement that’s named the "leopard" skin.

How does the future look like?

The future is definitely not very rosy. I am not sure how this disease will progress in the future. It may become worse and cause permanent blindness or leave my skin disfigured. Even if I recover, some degree of blindness and scarring of the skin may remain. It is clear that I will never be able to live a normal life.

What are the risk factors?

The doctor told me Onchocerciasis is caused due to a worm known as Onchocerca volvulus. He told me I might have contracted this infection through the bites of a blackfly when I had gone to visit my ailing friends. This information alarmed me and my family. It was clear that my family members too could contract this disease from me. So, we make sure to take all possible precautions to avoid mosquito bites.

We are using mosquito repellents, wearing long-sleeved clothes even while at home and ensuring the house and the surroundings are clean so that the place does not become a breeding ground for the mosquitoes.

The causes and evolution of Onchocerciasis

The doctor told me that the symptoms of onchocerciasis might take several months to develop after a person has been infected with the parasites through the mosquito bites. But, once the symptoms develop, it begins to affect the skin and the eyes severely causing significant damage to these organs.

The progress of this disease depends on whether the infection is detected early and how well the body responds to the treatment. I hope the healthy changes I have made in my life as far as my diet is concerned and the precautions I am taking help me to recover faster.

What are the psychological effects when you have river blindness?

Sometimes I feel am I being punished for some wrong deeds I made in the past! Why am I suffering from such a severe infection that will leave its marks for my entire life?

Onchocerciasis has taken away the joy of my life. I cannot go out; I cannot eat properly; I cannot even watch my favorite TV shows. There is nothing good left in my life!

Topics: Onchocerciasis

Dr. Jyothi Shenoy

Written by Dr. Jyothi Shenoy

Dr. Jyothi Shenoy is a doctor having a clinical experience of more than 15 years. She has an expertise in treating acute and chronic diseases like obesity, IBS, asthma, arthritis, Autism, ADHD, hypertension, diabetes, high cholesterol, allergies, cancer, infections, and skin diseases. She believes in treating the patients in a holistic manner. She aims at educating the patients about the illness and providing tips related to their lifestyle and diet to ensure a long-term relief from the disease and preventing its recurrence.