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A day in the life of an patient with Buruli ulcer

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Few years ago, I was diagnosed with a chronic infection called Buruli ulcer, a malady caused by Mycobacterium ulcerans Initially, this disease seemed like any other infection. However, it turned out to be the worst nightmare of my life. It’s not a minor infection that goes away within a few days. In my case, 3 years have already passed and I am still reeling under the burden of this infection. I decided to share with you which are its sympthoms and how this disease has affected my routine life.

Waking up in the morning

I have developed a few nodules on my skin. These are painless. So, when I wake up, I feel like a normal person. However, the reality strikes me when I come in front of my bath mirror. I have become used to the sight of my own ugly face and skin. It’s no longer as attractive and as clean as it used to be. I hate looking at myself in the mirror. I quietly brush my teeth and take a bath without looking at my reflection in the mirror. I do not want to start my day on a depressive note. Though I hate to say this about myself, I must accept that I no longer make up for a pretty sight someone would like to have first in the morning.

Starting the day

Buruli ulcer that started with sympthoms as a few painless nodules has progressed today to form several nodules on my face, arms, back, and legs. Some of these nodules are over the joints due to which I find it difficult to perform simple activities like eating my meals and taking a bath. I cannot even bend to tie the shoelace as there has been some amount of damage to my backbone also. It takes longer than usual to complete my routine tasks in the morning due to the restrictions caused by this disease.

Breakfast, lunch, and dinner

Frankly, I do not feel like eating much. There are several reasons for me losing my appetite. The sight of my own hands with nodules on them, and the inability to move my elbows and facial muscles have made eating just a ritual that must be completed for the sake of it. I eat very small amount of food and get away from the dining table. At the office, too, I prefer to eat my lunch alone, away from my colleagues. I want to avoid any interaction with them. However, whatever I eat, I make sure it’s healthy and nutritious. I am already suffering a lot due to Buruli ulcer and I do not want to worsen my health by being careless about my diet.

Going to work and taking medications

When I was diagnosed with Buruli ulcer, I was prescribed some antibiotics treatment to control the infection. Though the initial acute symptoms subsided with these medications, the painless nodules persisted. Sometimes, the nodules break up leaving an ulcer. I have to apply local antibiotics over the ulcerated part to prevent reinfection. I am also advised to follow complementary treatments for the management of morbidity that has arisen due to this disease.

I have to undergo surgical interventions for the wound management like debridement and grafting of the affected skin area. This helps to speed up the healing and shortens the duration of recovery for the particular nodule. I am also undergoing physiotherapy to prevent further disability and learn to adapt to the changed way of living forced on me due to the multiple nodules formed on the skin and over the joints. The variable course of this disease and the frequent visits to doctor together with the occasional hospitalizations has resulted in frequent absenteeism from my work.

The disfigurement caused due to the nodules have also reduced my prospects for the advancement in my career. Unfortunately, I find myself unable to make the first good impression on the clients, due to which my employer had to lose a few contracts. So, I have been restricted to working at the back office to minimize my interaction with the clients.

Prevention of complications

I apply moisturiser on my skin regularly. There is a lot of destruction of the skin and soft tissues in my body. So, it’s very important for me to keep them protected against excessive dryness, infective organisms, pollutants, and chemicals. So, I have also minimized the use of cosmetics containing chemicals. I wear appropriate protective gears while stepping out of the house to reduce the exposure to pollutants in the environment. I keep my skin clean to avoid infections especially if there is an ulceration.

What are the daily limitations and what are the fears?

Unfortunately, there is no cure or effective treatment for Buruli ulcer. The all I can do is try to minimize my sufferings, and disabilities caused by this disease. However, since it’s a chronic infection, I have to be prepared for the frequent nodules appearing every now and then on my skin. I have to live with the disfigurement caused due to Buruli ulcer. It has affected my appearance significantly because of which my self-esteem and confidence have reduced a lot. I avoid meeting people. I have stopped attending social events and even avoid going out with my friends and relatives. I fear someone might pass an unsavory comment on my appearance that might hurt me and my family.

How does the future look like?

Debility is another symptom that has come up along with Buruli ulcer. I feel very weak and tired most of the times. It is partially because of the infection and partially because of my reduced appetite. This debility has only added to my sufferings.The doctor has told me that this disease will persist for several years and even throughout my lifetime. The future is certainly not bright if an effective treatment is not discovered. My personal, social, and professional lives have taken a beating because of Buruli ulcer.

What are the risk factors?

The doctor told me that Buruli ulcer is caused due to an infection by a bacterium called Mycobacterium ulcerans. The symptoms of Buruli ulcer are the result of the toxin – mycolactone – released by this organism. It causes damage to the skin and other tissues and also inhibits the functions of the immune system. It seems this infection spreads due to the contact of the skin with contaminated water. I suppose I might have contracted this infection while swimming in a pool having contaminated water.

The evolution of Buruli ulcers

Over the past few years, Buruli ulcers have progressed to cause ulcerations over the nodules. Some patients are lucky enough to suffer from a mild form of this infection in which a single small lesion develops on the skin. Some patients suffer from several non-ulcerative as well as ulcerative lesions with plaque formation. But, I am suffering from a more serious and disseminated form of Buruli ulcers. Apart from the skin, it has also affected my joints and caused considerable disfigurement and disability.

What are the psychological effects when you have Buruli ulcers?

It’s not easy to face others when you know they cringe in their minds upon seeing your face. Most of my friends, colleagues, and relative are used to seeing me in this deformed appearance. They have been kind enough to not show their feelings while talking to me. But, the moment I turn my back, I can hear them whispering a few words of sympathy or even mocking me. A single infection has turned my life upside down. I feel as if I am orchestrated from the community. I do not blame them or anyone. But, this disease has left me not just with a physical disability but also mental disability. I have lost my confidence and sometimes, feel as if my life is no longer worth anything!

Topics: buruli ulcer

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.