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Noma: “I want everyone to know that there is ability in disability"

16 Dec 21

Noma: “I want everyone to know that there is ability in disability"

Amina, an 18-year-old noma patient, waiting in the MSF-supported Sokoto hospital Caption
Amina, an 18-year-old noma patient, waiting in the MSF-supported Sokoto hospital
Mulikat - MSF hygiene officer and patient advocate

Mulikat

Patient advocate

Mulikat is a survivor of noma, an infection that affects mainly children and can leave survivors with severe facial disfigurements and life-threatening impairments.

More than twenty years ago, she came from the city of Lagos in the south to Sokoto in northwest Nigeria, seeking medical care and hope.

Today, she works as a hygiene officer at the MSF-supported Noma Children’s Hospital in Sokoto, and speaks out on behalf of other people affected by this devastating and neglected disease.

Here, she shares her story...


As a survivor, living with the consequences of noma is hard. Nobody wants to associate with you, nobody wants to talk to you because of discrimination and stigma.

But there is a way out: surgery brings a chance to heal.

For a survivor of noma, coming to the Sokoto hospital is life-changing. Before I started my treatment, I had lost hope, but after the operations I began to understand that I am still a human being like others.

"As long as there is life, there is hope, and with hope, there is nothing you cannot do"

Mulikat
|
MSF patient advocate

The person who helped me realise it was Dr Adeniyi Adetunji, who works at the Sokoto Hospital. He has changed everything for me. He motivated me go back to school.

At that point, I did not even want to try it – because of the stigma, because of how people looked at me whenever I came near them. But Dr Adeniyi encouraged me. He told me that I should see myself as a changed person. He wanted me to go to the community and to give back.

So I went, and found motivation and courage.

Mulikat speaking at an MSF event on noma Caption
Mulikat speaking at an MSF event on noma

At school, I studied health record management. Then, in 2018, MSF offered me a job. If it hadn’t been for that offer, I don’t know where I would be as I had nowhere to go.

Today, I am a hygiene officer, working with cleaners and patients in the hospital. I make sure the environment is clean and I talk to patients and caregivers about personal hygiene.

In numbers: Noma

1_1_Patients

90%

PEOPLE WITH NOMA WHO DIE WITHIN TWO WEEKS WITHOUT TREATMENT

5_3_Group_Recruitment_Host

140,000

ESTIMATED NUMBER OF CHILDREN AFFECTED EACH YEAR

7_5_time

2 WEEKS

AMOUNT OF TIME RECOVERY TAKES WITH TREATMENT

I also help our mental health team to support noma survivors, who are just like me in the past.

I share with them my experience. I tell them that they should be very strong and that things will get better. They know I was in their situation before, some of them have even seen my picture taken before the surgeries. But look at me now!

As long as there is life, there is hope, and with hope, there is nothing you cannot do.

My MSF colleagues are easy to work with and they see me as they see themselves. There is no stigma. I am very happy that they have accepted me in the organisation, it’s a great joy for me.

We also have another colleague in the hospital, working for the Ministry of Health, who is a survivor of noma, Dahiru. He works as a cleaner.

A 14-year-old patient at Sokoto Noma Hospital in Nigeria has a consultation with an MSF surgeon Caption
A 14-year-old patient at Sokoto Noma Hospital in Nigeria has a consultation with an MSF surgeon

Doctors in Sokoto hospital should continue to empower patients and encourage them to return to school, so that they can become advocates.

It’s a long journey, but when patients go back to the community after surgeries, they go back different.

When you look at me, you can see that I have been through something difficult in life. But I don’t think about my past anymore. My goal is to inspire people.

I want to share my story, so that everyone knows that noma is real and that there is ability in disability.

MSF and noma

Noma is a facial gangrene infection that affects children in particular. Its name comes from the Greek word “nomē”, meaning "to devour". The disease starts in the mouth and eats away the facial tissue, leaving survivors with severe disfigurements. These can cause life-threatening impairments and crippling social stigma.

The World Health Organization estimates that around 140,000 new noma cases emerge every year.