Tropical Medicine Rounds

Patterns of skin cancer and treatment outcomes for patients
with albinism at Kisangani Clinic, Democratic Republic of
Congo
Gaylord Inena1, MD, Brian Chu2, BS, Dadi Falay1,3, MD, Bambale Limengo1,3, MD,
Ibanda Matondo1, MD, Abisa Bokanga3, MD, Carrie Kovarik4, MD and
Victoria L. Williams4, MD

1

Cinquanteraire Hospital of Kisangani,
Kisangani, Democratic Republic of Congo,
2
University of Pennsylvania Perelman
School of Medicine, Philadelphia, PA, USA,
3
Kisangani University Clinics, Kisangani,
Democratic Republic of Congo, and
4
Department of Dermatology, University of
Pennsylvania, Philadelphia, PA, USA
Correspondence
Victoria L. Williams, MD
3737 Market St
Philadelphia, PA 19104
USA
E-mail: willv@pennmedicine.upenn.edu
Conflict of interest: None.
Funding source: None.

Abstract
Background People with albinism (PWA) are at increased risk of photodamage and skin
cancer. In many parts of Africa, there is a significant lack of knowledge regarding albinism
which can lead to societal stigma, discrimination, and persecution from an early age. In the
Democratic Republic of Congo (DRC), there is limited clinical data on PWA and skin
cancer. We aim to better understand sociodemographics, risk factors, clinical features, and
outcomes of this population.
Methods Patients with a diagnosis of albinism and skin cancer presenting to Kisangani
Albino Clinic were enrolled.
Results Of 205 PWA, 61 patients were diagnosed with skin cancer with a mean age of
26.5 years. Common occupations were student (45.6%) or unemployed (26.4%).
Discrimination was experienced from close contacts (24.4%) and society (67.4%). A
majority (88.5%) had never used sunscreen, only 4.9% used fully sun protective clothing,
and 90.2% spent 4 or more hours in the sun daily. Skin cancers had a mean size of
3.8 cm and were most commonly located on the face (47.7%). Squamous cell carcinoma
was the most common histopathological diagnosis. Most patients underwent excision, and
90.2% had clinical clearance of tumors at a mean follow-up of 5.7 months.
Conclusion People living with albinism in the DRC experience a high rate of

doi: 10.1111/ijd.14988

nonmelanoma skin cancers at a young age and additionally face a number of psychosocial
challenges. This study represents the first attempt to analyze a cohort of patients with
albinism from the DRC and serves to increase awareness of this vulnerable population.

Introduction

diagnoses being made at advanced stages in PWA with a poor
prognosis.2,5–8

Albinism is a rare genetic condition with a worldwide incidence

In many parts of Africa, there is a significant lack of knowl-

of 1 in 20,000 births, but rates as high as 1 in 1,000 births are

edge regarding albinism and the specific healthcare needs of

reported in certain parts of Africa. Albinism is characterized by

PWA, which can lead to societal stigma, discrimination, and

reduced or absence of pigmentation of the hair, skin, and eyes,

persecution from an early age.9–11 Myths and superstitions
attached to albinism including fear of contagion, fear of bad

as a result of deficient melanin production by melanocytes. As
melanin is a photoprotective pigment that absorbs ultraviolet
radiation, people living with albinism (PWA) experience visual

luck, and the belief that sexual intercourse with PWA cures

defects and are at increased risk of photodamage and skin can-

members of society.11,12 Alarmingly, these myths have even led

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HIV/AIDS can prevent PWA from being accepted as equal

cer. PWA in Africa have a reported 1,000 times higher risk of

to the murder and maiming of PWA, most prominently around

squamous cell carcinoma (SCC) than in the general popula-

the Great Lakes region of central Africa.13

2

tion. In equatorial African countries like Nigeria and Tanzania,

In the Democratic Republic of Congo (DRC), there is still no

prior research has demonstrated that PWA commonly develop

reliable data on the prevalence, clinical features, or clinical outcomes of PWA. Only a single case report documenting the

nonmelanoma skin cancers on sun-exposed areas at younger
ages than typically seen in Caucasian patients.3,4 Studies in a
number of African countries have demonstrated skin cancer
ª 2020 the International Society of Dermatology

treatment of an advanced basal cell carcinoma (BCC) in an
albino patient has been published from the DRC.14 The
International Journal of Dermatology 2020

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