Elysium Noma Survivors Association is the first noma survivors organisation founded by two of 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 get more attention and be added to the World Health Organization (WHO) list of Neglected Tropical Diseases (NTDs). Despite being a disease known since the antiquity, 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 the ones who didn’t survive noma, especially children 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 cofounded Elysium to share our experiences and help people understand that while the acute phase of noma is brief, its consequences represent a lifelong journey for the rare survivors like us. With up to 90% of those affected succumbing to the disease, the remaining 10% who survive face a considerable burden.
Firstly, the difficult 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 become survivors once and for all – 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 crucial aspects for medical and humanitarian organisations to address. We also emphasise the importance of oral health and its impact on overall well-being.
Moreover, we urge governments to 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.
Breaking News:
WHO has officially recognised noma as a neglected tropical disease!
In a pivotal move towards addressing one of the world’s most underrecognized health challenges, the World Health Organization (WHO) today announced the inclusion of noma (cancrum oris or gangrenous stomatitis) in its official list of neglected tropical diseases (NTDs). This decision, which was recommended by the 17th meeting of the Strategic and Technical Advisory Group for Neglected Tropical Diseases (STAG-NTD), underscores WHO’s commitment to expanding health services to the world’s most vulnerable populations.
Reflecting on the past year since Elysium’s official founding on November 15, 2022, we are filled with immense pride for all that we have achieved in such a short span of time. Today, we need your support to go even a step further. By filling this form, we would like to invite you to become an ally of Elysium.
Noma is often referred to as the ‘Face of Poverty’. We think it is 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 ultimately improve the quality of life for those who have been affected by it and eradicate the disease. 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.
