Elysium Noma Survivors Association, is the first noma survivors organisation founded by the very rare survivors of noma in November 2022 in Stockholm, Sweden.
The founders of the Elysium Noma Survivors Association, Mulikat Okanlawon and Fidel Strub, are actively advocating for Noma to be added to the WHO Neglected Tropical Diseases (NTDs) list. Despite being a disease with a history dating back over 1000 years, Noma remains relatively unknown.
We chose the name ‘Elysium’ because it represents the final resting place of the heroic and pure. We are dedicated to honouring the memory of Noma victims, especially children and toddlers who endured unimaginable suffering. We hope that in the Elysian Fields, they find the peace and happiness they deserve. Through our work, we strive to raise awareness of this devastating disease and support survivors in their journey towards healing and recovery.
We co-founded Elysium to share our experiences and help people understand that while the acute phase of noma is brief, its consequences create a lifelong journey for the rare survivors like us. With 90% of those affected succumbing to the disease, the remaining 10% who survive face a considerable burden.
Firstly, the complex healing process often leads to medical complications, causing many survivors to die indirectly from noma. Additionally, the mental battle is challenging, as survivors grapple with acceptance and the will to live. Fidel struggled for around 20 years, and Mulikat for 15 years, before embracing their fates.
Only then do we truly become survivors – mentally stable and no longer endangering ourselves. Our ability to speak English enables us to share our story with a wider audience, raising awareness and offering insights on vital aspects for organisations to address.
We also emphasise the importance of oral health and its impact on overall well-being.
Moreover, we urge governments to not only accept help but also address the complex causes of noma. Combating this disease requires raising health standards, investing in education, infrastructure, and social security. By securing these elements, noma and other Neglected Tropical Diseases can be eradicated, creating a win-win situation for all.
Noma is often referred as the “Face of Poverty”. We think it more like the face of neglect instead.
Noma (cancrum oris or gangrenous stomatitis) is a rapidly progressive non transmittable bacterial infection of the face that affects mostly children between the ages of 2 to 7 years. Adults are rarely affected. Noma kills faster than doctors and parents can react due to lack of knowledge about the disease and its symptoms. Noma is characterised by the destruction of the soft and hard tissues of the face, including the lips, cheeks, and gums, along with associated bones.
The first ever registered case of noma can be traced back nearly a thousand years, yet there are no clear data about noma and there are more speculations than facts. Even the cause of this disease is still unknown. That is why we call it the face of neglect.
The Deadly Disease You Never Heard About — And How You Can Help
How is it that after decades of practicing infectious disease and studying tropical medicine briefly in Peru, India, and Thailand—I only now learn of the infection called noma?
When I was three, my mouth started to smell bad. Then I lost part of my face
Noma – more than a public health challenge
Noma is a fatal necrotising noncommunicable disease that mainly affects children in poor communities in Africa and South-East Asia. It is estimated to have a 90% fatality rate.
Mulikat Okanlawon, Noma Survivor
She first came to the hospital more than 20 years ago to receive treatment for noma, a neglected disease that if untreated leads to severe disfigurement and often death.
Noma: The hidden Childhood disease known as the ‘face of poverty’
This little known and preventable disease disfigures those it does not kill – and a new campaign hopes to raise awareness and eradicate it entirely.
Restoring Dignity
Noma is a devastating disease that can cause immense destruction in a short period of time, but the recovery and rebuilding process can take much longer, creating an unfair situation for those affected and their loved ones.
The first ever Stakeholders meeting on noma
On 6 May 2022, WHO headquarters and the WHO Regional Office for Africa jointly hosted the first ever stakeholders meeting on noma.
Noma, a necrotising noncommunicable disease starting in the mouth, is estimated to be fatal for 90% of affected children.
What We Do
Our mission is to eradicate and raise awareness about noma and improve the quality of life for those who have been affected by it. We are advocating for noma to be included on the WHO NTDs list, as this would help to increase global awareness and resources for those affected. We believe that through education and awareness, we can make a difference. Join us in spreading awareness about noma and advocating for its inclusion on the WHO NTDs list. Together, we can create a world free from noma and its harmful effects on communities around the globe.
