ADDRESSING THE ONGOING DISCRIMINATION AGAINST ALBINOS AS THE INTERNATIONAL ALBINISM AWARENESS DAY IS MARKED TODAY SATURDAY JUNE 13, 2015
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
maldevelopment 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 is 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.
Today Saturday June 13, the world over is
marking the maiden 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.
The
UN calls on all stakeholders to use this day to take action that will end
discrimination, stigma, intimidation, humiliation, attacks, and what have you,
against persons living with albinism worldwide. To this end, we can take action
by indulging in the following:
1. Inviting
a local organization of persons with albinism to address our respective
institutions.
2. 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.
3. 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.
And finally,
but not the least, sponsoring a local radio, television or print media campaign
on June 13 to raise awareness about the rights of persons with albinism.
In addition, as the global community
marks the first annual International Albinism Awareness Day, there is a
pressing need for the law makers to enact a strict law 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. Think about it!
COMR FRED DOC
NWAOZOR
(The Media Ambassador)
_____________________________________
frednwaozor@gmail.com
+2348028608056
@fdnnwaozor
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