ADDRESSING ONGOING DISCRIMINATION AGAINST ALBINOS AS THE INTERNATIONAL ALBINISM AWARENESS DAY IS MARKED TODAY MONDAY JUNE 13, 2016
Today June 13, the world over is commemorating
the 2016 edition of the International Albinism Awareness Day. On Wednesday 19th
of November 2014, the General Assembly of the United Nations (UN) adopted June
13 each year as the International Albinism Awareness Day via a historic
resolution. June 13 was chosen because it was on that day in 2013 that the UN
adopted its first ever resolution on albinism.
Albinism is a genetic deficiency of
melanin pigment production in which the carrier, either a person or animal,
possesses very white skin, white hair and pink eyes. It is usually inherited as
an autosomal recessive condition. The carrier of the syndrome is generally
regarded as an ‘albino’.
In albinism, a number of different
chromosomes are involved, depending upon the type. There are two major classes
of albinism, namely; Oculocutaneous albinism and Ocular albinism.
Oculocutaneous albinism affects the eyes, hair and skin, whereas only the eyes
are affected in Ocular albinism.
Approximately one in seventeen thousand (17,000)
persons worldwide has one of the types of albinism. It is noteworthy that,
albinism can affect any race and has been extensively studied in other animal
species like mouse.
Visual plights are a significant feature
of albinism. In albinism condition, melanin is reduced or could be totally
absent in the eye, skin, hair as well as the brain, thereby causing mal-development
of neural pathways related to vision. Abnormalities in cone morphology have
also been detected in the fovea. More so, severe nystagmus, photophobia,
strabismus, and reduced visual acuity are common features.
The precise appearance of an albino
depends on which syndrome or condition that’s involved. Medical analysts are of
the view that people with albinism have red eyes, but the colour of the iris
varies from a dull grey to blue or even brown. In albinism condition, a brown
iris is common among ethnic groups with darker pigmentation.
Under certain lighting conditions, there
is a reddish or violet hue that reflects through the iris from the retina and
the eyes then appear red, similar to the red eye in flash photography. In some
types of albinism, the red colour can reflect back through the iris as well as
the pupil.
Diagnosis is based on careful history of
pigment development and an examination of the skin, hair and eyes. The only
type of albinism that has white hair at birth is the OCA1. The most accurate
test for determining the specific type of albinism is a genetic test, though
the test is useful only for families that have individuals with albinism. Hence
it cannot be performed practically as a screening test for the general
population.
None of the available tests is capable of
detecting all the mutations of the genes that cause albinism. And, responsible
mutations cannot be detected in a small number of individuals and families with
albinism. Optical coherence tomography can be a useful adjunct in cases of OCA,
which display atypical features.
Ophthalmologists and optometrists can help
people living with albinism to compensate for their eye problems but they
cannot be cured. Astigmatism is the most common eye problem across all the
subtypes of albinism, whilst there is a high frequency of hypermetropia in
OCA1A patients. However, ordinary glasses or bifocals with a strong reading
correction may serve well for many people with albinism.
For photophobia, dark glasses or
photo-chromic lenses are recommendable. There is no proof that dark glasses
will improve vision even when used at a very early age, but they may improve
comfort. Recent advances include contact lenses with a special iris tint and
clear pupil area as well as bi-level telemicroscopes fitted on to patients’
prescription spectacles.
Albinism can be prevented, though could be
expensive for low-income families. Gene testing can be used to determine if a
foetus has albinism. Amniocentesis is performed at 16 to 18 weeks of gestation.
But, those considering such testing should be aware that, if given proper
support, children with albinism can function well despite considerable visual
handicap and also enjoy normal lifespan. Hence, the UN calls on all
stakeholders to use this day to take action that would end stigma,
intimidation, humiliation, attacks, and all forms of discrimination against
persons living with albinism worldwide.
To this end, we can take action by
indulging in, but not limited to, the following: inviting a local organization
of persons with albinism to address our respective institutions; creating
discussion forums in our workplaces on how we, both individually and
collectively, can contribute towards ending the discrimination experienced by
persons with albinism through our own belief systems; encouraging our friends, associates,
relations, and/or employees, as the case may be, to spend reasonable time with
the various societies of persons with albinism in order to assist them in
addressing discrimination, among other uncalled treatments; as well as
sponsoring a local radio, television or print media campaign on June 13 to
raise awareness about the rights of persons with albinism.
The last time I checked, an average albino
in the contemporary Nigerian society was earnestly yearning for special treatments
in some cases or sectors including classrooms, elections, and what have you.
Our various schools at all levels ought to endeavour to provide them with
enabling materials during learning sections; they should also be allowed to sit
at the front. The INEC must equally ensure that they are given preferential
treatments such as allowing them to cast their votes first as well as granting
them adequate sensitization prior to the polls.
The law makers, on their part, are
required to pass a bill that would thoroughly address all the challenges being
faced by albinos in Nigeria with a view to actualizing a country where fairness
and equity are seen as its watchword. Free or subsidized medical treatments for
the albinos, as the case may be, can equally be considered in the proposed
bill. Think about it!
Comr Fred Doc Nwaozor
(TheMediaAmbassador)
-Public Affairs
analyst & Civil Rights activist-
Chief Executive
Director, Centre for Counselling, Research
& Career
Development - Owerri
_____________________________________
frednwaozor@gmail.com
+2348028608056
Twitter:
@mediambassador
No comments:
Post a Comment