The Burma Skincare Initiative, Managing EB Without Borders

The Burma Skincare Initiative and Managing EB without Borders

On the 11th anniversary of World Humanitarian Day DEBRA would like to celebrate the impressive work of our EB specialists who support medical education and training in EB and Dermatology globally. Doctor Su Lwin, Dermatology Registrar and Honorary Clinical Research Fellow, St John’s Institute of Dermatology, together with Professor Chris Griffiths OBE, Foundation Professor of Dermatology, University of Manchester, founded the Burma Skincare Initiative (BSI) charity in 2018 to provide medical care for the unmet needs of disadvantaged communities in Myanmar. Find out more about their extraordinary journey to provide dermatological care and training to medical staff and families in the DEBRA Guest blog below.  

Removing barriers to skincare access for the “forgotten people” of a little-known country in South East Asia. 

The Burma Skincare Initiative, Managing EB Without Borders

Myanmar, previously known as Burma, has a population of approximately 53 million, comprising 135 ethnic groups, with their own languages and cultures.  The country transitioned to a civilian government in 2011 after five decades of military dictatorship but civil war has ravaged its people and its economy since independence from the British in 1948.  As a consequence of the interminable conflict and upheaval, many people have resettled as refugees abroad but at least 587,000 have remained as internally displaced persons (IDPs) – “the forgotten people of Myanmar” (Figure 1). 

Tragically, and as a consequence of chronic under-funding, healthcare in Myanmar is ranked by the WHO as amongst the lowest in the world.  Skincare is particularly badly affected with only three dermatology specialist centres in the country, thus underprivileged individuals may have to travel for days to obtain dermatological care but for the IDPs access is minimal at best. 

The Burma Skincare Initiative

The Burma Skincare Initiative, Managing EB Without Borders

The Burma Skincare Initiative, Managing EB Without Borders

The Burma Skincare Initiative, Managing EB Without Borders

We founded the Burma Skincare Initiative (BSI) charity (Figure 2), in 2018 with the vision of removing barriers to skincare access in Myanmar. The particular focus is on disadvantaged communities, for example the IDPs, and those living in rural and inaccessible parts of the country such as the mountainous regions in the North and the islands in the South Andaman Sea. 

In December 2018 and February 2020, we visited Myanmar with the aim of identifying the unmet skincare needs of underprivileged people in the country. During those trips we conducted dermatology consultations in myriad settings, ranging from impromptu clinics at orphanages in central Myanmar and a township (district general) hospital in the far South (Figure 3) to virtual clinics reaching out to remote parts of the country. Amongst these and other innovations, the BSI organised and ran the first ever international dermatology meeting in Myanmar in February 2020 (Figure 4). Two eminent EB researchers and DEBRA grant holders, Professors Jemima Mellerio and John McGrath of Kings College London, spoke at the meeting. Both discussed the diagnosis and management of EB, their lectures attracting considerable interest from local dermatologists. 

Professor McGrath commented that:

Unmet need in dermatology in Myanmar is very apparent, what struck me was just how the local dermatologists embraced all the information on setting up diagnostic facilities and creating essential healthcare for people with EB and other rare skin diseases. Building medical and nursing teams, establishing international collaborations, and improving patients’ lives are fundamentally at the heart of the BSI and local initiatives.

Orphanages: Victims of the Civil War

The Burma Skincare Initiative, Managing EB Without Borders

The Burma Skincare Initiative, Managing EB Without Borders

In February 2020, with the help of two local philanthropists, we visited five orphanages, located in monasteries and nunneries, in central Myanmar, each catering for 100-200 children, most of whom were IDPs.  After consultation with the heads of the orphanages, we were given permission to perform impromptu dermatology clinics (Figure 5).  Overall, and as expected, communicable skin diseases, such as scalp ringworm (fungal infection) (Figure 6) were present in most of the children with severe scarring and disfigurement in some. 

Scabies was seen predominantly amongst the boys, along with infected eczema and allergic contact and irritant dermatitis.  The diagnoses and management plans for the children as a group, as well as for individual cases, were conveyed to the head monks and nuns and the relevant medications donated.  The BSI has the development of sustainable skincare services for the orphanages as one of its long-term objectives. 

Genetic Skin Diseases: A Desperate Unmet Need in Myanmar

The Burma Skincare Initiative, Managing EB Without Borders

As the news of our skincare mission in Myanmar spread to the mountainous Chin Sate in the North West of the country, the parents of two children suffering from chronic debilitating skin diseases reached out to us via a local non-governmental organisation (NGO).  We conducted virtual consultations using the “Viber” app (equivalent of WhatsApp) with the two children and their parents during our visit (Figure 7).  We diagnosed an 11 year-old girl with long-standing tree bark-like skin lesions (Figure 8) as having a congenital form of ichthyosis and referred her to the specialist dermatology centre at Yangon (Rangoon) General Hospital for further management and support.  We also saw a number of infants with congenital ichthyosis during our visit to a second dermatology centre in Yangon: North Okkalapa General Hospital. 

The second child was a 6 year-old boy with multiple, rapidly growing skin tumours on his face (Figure 9). We were able to make the diagnosis of a rare genetic skin disorder, xeroderma pigmentosum, in which there is an impaired ability to repair DNA damage caused by sunlight, leading to serious skin cancers.  We counselled with advice about strict sun-protection and supportive measures and also referred him to the dermatology centre at Yangon General Hospital for further management.  We were deeply moved by the sheer resilience of these children despite the profound social and psychological stigma that they and their families suffered due to a lack of education and knowledge about these serious skin diseases. It motivated us to strive to establish clinical and patient support services to provide the long-term care that they both need and deserve. 

The local dermatologists informed us that there are EB patients in Myanmar, some fortunate enough to be under their care albeit this is suboptimal by international standards in terms of diagnostics, resources and expertise.  All diagnoses of EB in Myanmar are made clinically as there are no molecular diagnostics to ascertain the defective gene underlying the disease which is crucial for disease classification, treatment planning, prognosis and genetic counselling.  There is thus a significant and desperate unmet need for individuals living with EB and other rare genetic skin diseases in Myanmar.

Managing EB without Borders for Myanmar

Our experience with these two children highlighted to us the importance of establishing clinical and patient support services, a molecular diagnostic laboratory, public campaigns and training and research initiatives for dermatologists in Myanmar to improve the management of, and hence the quality of life for, people living with EB and other genetic skin diseases in their country.  Indeed, there is a huge opportunity in Myanmar for the BSI and DEBRA to work together, along with EB experts in the UK and elsewhere, to fulfil this aspiration; one that is wholly aligned with the vision of “a world where anyone living with EB has support from a DEBRA group to access clinical and social care”. 

Professor Mellerio commented that:

Despite 50 different national DEBRA organisations working around the world, the reality is that for many families living with EB, the support and information DEBRA can provide is not available. Severely limited access to the disease-specific knowledge needed to care for EB and other rare genetic skin diseases in countries such as Myanmar means that life is incredibly tough for those affected. The BSI is a tremendous opportunity to reach out to families living with these conditions, to help train local teams, improve access to healthcare and to build links to provide virtual clinics and advice from experts working in specialist centres around the world.

Despite the seemingly overwhelming challenges to realise a high quality and sustainable dermatology service for Myanmar with equitable skincare access, it is our fervent belief that this is achievable. This can only happen by collaboration between the international and local dermatology communities, industry, charities, NGOs and government to build a solid foundation based on education, research and clinical services; the very vision on which the BSI was established.  We are at the start of a long journey, for sure, but certainly one worth embarking on, primarily for the benefit of the underprivileged people of the fragile yet beautiful country that is Myanmar (Figure 10).

Dr Su Lwin is currently working on a project funded by DEBRA UK to develop spray-on gene-modified cells as a potential therapy for Recessive Dystrophic EB (RDEB). To read more about this project click here.

Dr Su Lwin is a dermatology registrar and an honorary research fellow at St John’s Institute of Dermatology, Guy’s and St Thomas’ Hospitals and King’s College London.  She embarked on EB research in 2014 with Professors John McGrath and Jemima Mellerio and continues to focus on the development and clinical application of novel therapeutics for EB including gene and cell therapies and discovering new therapeutic targets for EB.  She is currently leading on a DEBRA-funded pre-clinical project to develop a spray-on gene therapy for RDEB.

Professor Chris Griffiths

Professor Chris Griffiths OBE is the Foundation Professor of Dermatology at the University of Manchester, UK. He has a significant national and international track record in dermatology research, administration and education and is highly active in humanitarian dermatology globally.