ADDRESSING ONGOING DISCRIMINATION AGAINST ALBINOS AS THE 2017 INTERNATIONAL ALBINISM AWARENESS DAY IS MARKED ON TUESDAY JUNE 13
Today, June 13, the world over is
commemorating the 2017 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.
So,
as Nigeria joins the rest of the world to commemorate the International
Albinism Awareness Day, we are expected to 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, should
equally be considered in the proposed bill. Think about it!
Comrade FDN Nwaozor
Executive
Director, Docfred Resource Clinic - Owerri
_____________________________________
Twitter:
@mediambassador
http://facebook.com/fred4nwaozor
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