Though she is of
marriageable age, Ada (not real name), a person with albinism (PWA), and lives
alone in one room rented house, in a slum area of Lagos State. Her trade is
hawking of nylon packing bags. After doing her daily chores at home in the
morning, she leaves home carrying a tray laden with black nylon bags to sell. By
mid-day, Ada’s skin would have turned red, mostly her face, neck, chest, head
and legs (i.e the exposed parts of her body). By the time she returns home in
the evening, after hawking in the hot African sun, Ada will be weak and in
severe pain as a result of sunburn. Despite
this, Ada will the following day, continue with her hawking business. As a
result of the constant exposure of her skin to the ultra-violent radiation of
the sun, she now has started developing big sores on her hard.
Asked why she must
engage in the business not favorable to her skin, Ada broke down into tears
narrating the story of her life. According to her, she hails from Delta State
where her father and siblings did not accept her as a member of the family.She
withdrew from school because her father preferred to send other children with black skin to school. With
frustration, she left home in her early twenties to start a life of herself. As
if these are not enough, people around her treats her as an abnormal person,
calling her names.
In Nigeria, albinism is
considered in many communities as a punishment from the gods for an ancestor’s
wrong doing or intercourse done during menstruation. As a result, the family
members of persons with albinism (PWA), experience discrimination from their
communities. Mothers of affected children are often accused of infidelity and
subjected to great deal of stigma, discrimination and psychological distress. To
overcome stigma and discrimination, people with albinism tend to be more
withdrawn to themselves most especially, children at school.This
is because the appearance of PWA in Nigeria is often a source of mockery,
discrimination and human rights violation.
Albinism
is found in all countries, races and group of people. It occurs in most animals
too (such as white cheetah, lion, crocodile, snake, monkey, and rhino, among
others. Also, persons with albinism
exist in Canada, Puerto Rico, UK, Panama, Brazil, Australia, New Zealand, Fiji,
India, Japan, Russia Indonesia, Chain Malaysia and USA. African countries where
are commonly found include Kenya, Nigeria, Tanzania, Uganda, Mali, South
Africa, Cameroon, and Malawi
The truth is that many
parents do not know they are carriers of recessive albinism genes until they
give birth to a child with albinism. The only difference between persons with
albinism and other human beings is that persons with albinism have bodies that
produce little or no melanin. They may have white, yellow, light brown or ginger
hair, eyelashes and eyebrows because of the lack of melanin in the hair. The
lack of melanin in the eyes impacts on sight while its lack in the skin have consequences
on their health and lifestyle choices.
Unknown to most people,
especially Africans, albinism is inherited from parents who carry the trait.
Every child has two copies of each types of colour trait-one from each parent.
If a child has two copies of albinism trait and one copy that can make albinism
pigment, the child can still make pigment. But two normally pigmented parents
who are both carriers of the trait can have a child with albinism.
There are mainly two
types of albinism. Oculocutaneous Albinism (OCA) which affects the skin, eyes
and hair and is seen equally in males and females.Ocular Albinism (OA) which
mainly affects the eyes with minimal or no skin and hair involvement and is mainly
seen in males. The frequency of albinism in the world is 1:170,000 although it
is said to have a higher frequency of 1:1,400 in Africa. Albinism is more
common in Africa, Indonesia and USA.
Health related problems
associated with albinism are sunburn, skin cancer and eye related problems. One
of the challenges of people with albinism is their sensitivity to the sun and
hazards that accompany sensitivity. Apart from the pain and scary experiences
the PWA goes through, it result to
massive disfiguring tumors on the skin when left untreated.
Persons with albinism are
more vulnerable to developing skin cancers because the skin lacks melanin. The
most common forms of skin cancer are Basal cell cancer followed by Squamous
cell cancer. Both cancers are caused by ultraviolent (UV) exposure over time.
Melanoma is a less common cancer but the most deadly. The causes of melanoma
are uncertain but UV exposure is a significant risk factor.
All the three cancers Squamous,
Basal and Melanoma, which appear on the surface of the skin only takes three
blistering sunburns to cause permanent skin damage. It is worth nothing that
immediate skin damage from UVB (light energy ultraviolent radiation) is painful
sunburn which causes redness of the skin.
The most commonly
affected parts of the body are the head and the neck and Squamous cell
carcinoma has been reported to be the commonest skin malignancy seen in PWA.
Exposure to ultraviolet radiation, inability to produce ephelides (‘freckles’)
and poor sun protection practice in PWA increase the risk of skin cancer.
According to a dermatologist,
DrAnabaEhiaghe, the outcome of treatment of skin cancer among PWA in most
developing countries has been poor because majority of these patients present
late to the hospital with advanced stage. ‘This is partly due to paucity of
local date regarding this condition and lack of community awareness on the
importance of early reporting to hospital for early diagnosis and treatment’,
she explained.
Eyesight and eyes
problems differ from person to person. They have varying degrees of visual
impairment due to irregular nerve connection to the eye and distorted retina
development. This visual impairment is extremely complex. In albinism, the
front and back of the eye develop differently, and nerve connection between the
eye and brain are altered. Albinism
does not cause total blindness, although many with the condition are classified
as “legally blind”. PWA is of equal intelligence to anyone else, and no
scientific study has ever linked the condition to impaired brain function or
mental processing in any way.Vision can be enhanced and optimized by low vision
devices and adjustments to lighting or sitting position.
According to an
ophthalmologist, DrSegunIkuomenikan, the complex visual impairment caused by
albinism is non- degenerative, and does not worsen over time. Glasses can
improve vision to a small or great degree depending on the individual, but some
loss of detailed vision will still remain for PWA. He said, ‘it is necessary
for PWA to protect their eyes always from the rays of the sun and they should
not wear plain glasses but photochronic or tinted and it should have
ultraviolent protection’.
Optometry services for
PWA is not common in Nigeria as a result, peculiar vision needs of PWA are not
well attended to. This has serious consequences for their educational and
professional performances. Teachers and parents are often ignorant of the need
to equip PWA with vision devices
In Tanzania, a charity
organisation known as Standing Voice support PWA to achieve their educational and
professional potential. The programme focuses on students with albinism in
their formative years. The programme is a network of clinics, developing low
vision care and devices to students with albinism in some regions of Tanzania.
By doing this, the cycle of poor educational performance, unemployment and
further segregation is broken by delivering low vision education and vision
aids in school and ensuring children with albinism do not lose out on their
educational aspirations. Teachers are not left out as their understanding of
albinism is been deppened by arming them with the knowledge required to improve
students care and combat bullying.
The programme is being
directed by, a leading specialist in the low vision of PWA Dr Rebecca Kammer,who
was among the speakers at the first ever Pan African Albinism Conference (PAAC)
organised by Under The Same Sun (UTSS) in Tanzania recently.
The convener of the
conference was Peter Ash, the founder and CEO of UISS who is also a PWA. The conference which was held at the Julius
Nyerere International Convention Centre (JNICC), Dar es Salaam focused on
empowering PWA in Africa. Participants were
from 29 African countries (including Nigeria), US, Germany, UK, Norway,
Netherlands, Spain, Turkey, Italy, Belgium, France and Canada.
Through interactive
sessions, PWAwere educated on understanding albinism and how to
advocate for their rights and dignity in effective ways. Participants (mostly
PWAs) were attended to by skin care experts and low vision optometrist.
They were given free SPF sunscreen called Killsun
(KiinamanjaroSuncare). The cream contains filters that absorb and reflect the
radiation from the sun helping to protect the skin against the harmful effects
of the sun. Killsun which is produced at the regional Dermatology Training
Centre in Meshi, Tanzania is specifically designed for PWA.
A dermatologist, Dr.
OlusolaAyanlowo emphasized that ‘persons with albinism should avoid unprotected
sun exposure at all times by wearing sunglasses, hats, long sleeves, shots and
pants and by applying sunscreen, doing these things will automatically reduce
the likelihood of skin cancer and premature death’.
According to the United Nations, every member government
must protect persons with albinism and their family members as well as do
everything they can to end discrimination against PWA. The UN reminded everyone
in 2013 that persons with Albinism have the right to live, be secure,
education, health (for example free cancer treatment and sun protection cream).
The Nigerian Government has the duty to respect, protect and fulfill all the
rights stipulated in any International and National policy she has ratified (eg
UN and African Chapter on peoples and Human Rights).
The United Nations has
adapted several decisions known as resolutions on albinism. The first
resolution was adopted in June 2013 which condemned attacks and discrimination
against persons with albinism (adopted on June 13, 2013 at HRC resolution
23/13). The second proclaimedJune 13 as International Albinism Awareness Day
(adopted on November 18, 2014 as L.35). The African Chapter on People’s and
Human Rights (ACPHR) which is the mother of all rights at the African Human
level protects PWA. The African Commission on Human People’s Rights adopted a
decision also known as resolution that called on states in Africa to protect
persons with albinism and their families and to take concrete action to prevent
discrimination against them and bring to justice those who attack them (adopted
on November 5, 2013 as resolution No. 263).
Speaking
on this year’s celebration of International Albinism Awareness Day, UN Secretary Ban Ki-Moon called on UN member states
to recognize that human right apply to all people everywhere, including persons
with albinism.. He urged them to make special efforts to end discrimination
that threantens the well being of PWA.
As the world celebrate
IAAD with the theme ‘Celebrate diversity, promote inclusion, protect our
Rights’, this is a wake -up call to the
Nigerian Government to defend inherent dignity of PWA and in the process help
create better life for them. When PWA are cared for, loved and protected, they
excel.
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