Story by Charity Kihumba
Unknown to many people, a charitable trust aiming at helping people and
especially children living with albinism has been operating in Kenya for over
12 years.
The purpose of its Help Ever-Hurt Never initiative is to bring together
people of goodwill interested in joining hands with the organization to
improve the quality of life of people with Albinism.
What is albinism?
Albinism is a genetic condition present from birth and is characterized by
lack of Melanin pigment in the Skin, Hair and the Eyes. Melanin is a
photoprotective pigment that plays a major role in absorbing Ultra Violet
radiation from the sun. Lack of the pigment in the skin and hair makes the
Persons with Albinism appear light with blond hair. Lack of the pigment in
the Eyes makes them live with severe visual challenges and it is the major
cause of disability and morbidity in them.
Challenges of Living with Albinism in Africa
The condition of Albinism and its genetic nature is totally misunderstood in
the world. The birth of an Albino child in an African family is usually
considered as a ‘curse’. In many parts of Africa, people normally children
with Albinism are hunted down as if they are wild animals. Many continue
to be slaughtered by witchcraft practitioners in the misplaced belief that
their bones and body parts have magical powers of curing afflictions such
as cancer and AIDS. A very high price is put on their bones and body parts.
Many women are thrown out of their matrimonial homes on the birth of an
Albino child, on suspicions that the child was fathered by a white man.
There is a very high percentage of single parent children and children living
with grandparents in Africa
Ignorance, poverty and Tropical climate contribute greatly to children
suffering serious challenges in life. Africa’s most precious and beautiful
children continue to live a life of fear and ridicule devoid of parental love
and acceptance by the society
Albinism and The Skin
Absence of the Melanin pigment makes the skin of the persons with
Albinism to be extremely sensitive to the Ultraviolet radiation of the sun.
Exposure to the sun causes their skin to develop ‘Blisters’ and ‘Cracks’
leading to itching, pain and general discomfort. Prolonged exposure to
direct sunlight without skin protection can lead to development of Skin
Cancer.
Cancer in Albinism is preventable through avoiding direct exposure to
sunlight and using sunscreen lotions with High Sun Protection Factor 30
and above.
Albinism and The Eyes
Lack of Melanin pigment in the eyes leads to visual challenges and
reduced vision whose degree varies from person to person.
They could be Myopic (short sighted) Hypermetropic (long sighted) or
have Astigmatism which causes the images to appear unfocused.
Early diagnosis of the underlying Refractive error by an Ophthalmologist
and provision of appropriate glasses with Photochromatic lenses and other
visual aids before the age of 7 years can help improve and preserve sight.
Photochromatic glasses also helps the persons with Albinism to keep
their eyes open and not squint in sunlight and prevent development of
Amblyopia (low vision) in their later life. Persons with Albinism also have
red reflex in their pupils, their irises allow too much light to enter their
eyes leading to ‘photophobia’ which literally means ‘fear of light’. They
also have constant involuntary pendular movements of the eyes called
‘Nystagmus’ which results in problems in co-ordination and fixing of the
eyes on objects.
Albinism and Life Span
Albinism is associated with normal life span. It is an autosomal recessive
condition meaning the individual inherits the gene of Albinism from both
parents.
A person with Albinism can marry someone who is not a carrier of the gene
and raise families and have children with normal pigmentation.
Education in Albinism
There is a strong link between the child’s sight and their learning
capabilities, performance in school and in their education. Lack of melanin
in the eyes leads to poor vision in all persons with Albinism but they are not
blind and have adequate vision to study in normal Schools and in print.
They however require assistance with
• High contrast written material.
• Computers with large character display
• Copies of teachers notes for close up reading
• Permission to sit in the front of the class
• At least 30 minutes extra time during examination.
Goldalyn Kakuya Tanga a child with Albinism created history in Kenya by
emerging the best performing student at (K.C.P.E) in 2017. Scoring 455 out
of 500 marks proved to the world that disability is never inability. Through
her success she has set very high standards in academic excellence for
future generations of Children with Albinism in regular schools in Kenya.
The Albinism Foundation
Dr. Choksey Albinism Foundation is a charitable trust established in
Kenya with the objective of reaching out to and assisting people specially
children with Albinism.
The purpose of its Help Ever-Hurt Never initiatives is to bring together
people of goodwill interested in joining hands with the organization to
improve the quality of life of people with Albinism.
Dr. Prabha Choksey the founder, is an Ophthalmologist with over 40 years
of experience in the subject. In 2007 she realized the urgent need to reach
out to children with Albinism many of whom were single parent children
belonging to low socio-economic background and who were forced to
attend schools for the visually impaired at Primary and Secondary level
without addressing their low vision needs and challenges.
Since 2008 she has been offering Ophthalmic services free of cost to all
people with Albinism and providing them with free prescription
photochromatic glasses.
She is the proud recipient of several awards like; Award of Excellence from
Ophthalmic Society of East Africa for outstanding contribution to Eye Care
in East Africa in 2007, Award of the order of Moran of Burning Spear(MBS)
by the President of the Repuplic of Kenya H. E. Mwai Kibaki on 12th
December 2012, Award of Excellence from Kenya Women and Children
Wellness Centre and many more. She has also received appreciation
letters from albinism persons she has helped. Others include: Bharat Jyoti
Award(New Delhi, India), Bar Bari Prize, Jacob Well’s Award, Kenbharti’s
Women Achievers Award, Golden Heart Award among others. Lately she
has again been decorated with GHP Private Healthcare
Award(Opthalmology Practice of the Year 2020) and Best Albino Children’s
Support(East Africa).
Goals of the Foundation
Dr. Choksey Albinism Foundation has set several definite and achievable
goals aimed at making the life of people living with albinism more bearable
and fulfilling.
Gifting sight to persons with Albinism
The foundation is addressing the issues of visual challenge in people with
Albinism by providing free ophthalmic services and free prescription
photochromatic glasses to all persons with Albinism and has reached over
1000 people so far.
The foundation also facilitates access to sunscreen lotion with high sun
protection factor SPF 30 and above.
Striving to ensure quality education in regular schools
The foundation also runs school sponsorship programme for children from
low socio-economic background, orphans, single parent children and
children living with grandparents in Kenya.
Help Ever-Hurt Never initiative of Dr. Choksey Albinism Foundation
reaches out to assist financially young people at higher education in
Colleges and Universities, entrepreneurs and those who need support in
developing life skills such as Music, Art, ICT among other areas.
Raise awareness about Albinism
This way the foundation brings the attention of the world to the plight of
people living with Albinism in Africa where ignorance about the condition
and poverty contribute greatly to their suffering.
Demystifying the Myths About Albinism in Africa
Due to the fact that Albinism is least understood in the world and especially
in the African continent, the condition has also been associated with
multiple number of myths. Dr. Choksey foundation works hard to demystify
the condition.
Myth 1
Birth of an Albino child is a punishment from God and is a curse to
the family.
Albinism is a genetic condition that is passed on from both parents and is
present from birth.
Myth 2
Body parts of persons with Albinism make charms that can make
people rich and successful.
This myth in the past led to Albino children growing up with fear, ridicule,
low self-esteem, stigmatized and shunned by the society. Leaders and
decision makers of the world must give severe punishment to those who kill
and those who purchase the body parts of Albino children. Killings must
stop.
Myth 3
Persons with Albinism die early. Their life span is not more than 35
years.
Persons with Albinism have a normal life span.
If persons with Albinism marry someone who is not a carrier of the
gene, they can raise normal families and have children with normal
pigmentation.
Myth 4
Persons with Albinism have magical powers of curing people of
terminal diseases
such as Cancer and AIDS.
Like normal people persons with Albinism can themselves suffer from
cancer and AIDS.
Myth 5
If a person with Albinism is exposed to sun for a long time, he or she
will
get pigmented skin.
Due to lack of Melanin pigment the skin of persons with Albinism is
extremely sensitive to sunlight.
Myth 6
All children with Albinism are blind and must study in blind schools
or schools for the visually impaired.
With prescription glasses over 95% of persons with Albinism do not fall in
the bracket of legal blindness and can study in print in regular schools
Myth7
A child is born with Albinism when the mother is unfaithful in
marriage and that the child was fathered by a person of the white
race.
This Myth has led to a large number of broken families single parent albino
children and children brought up by grandparents in Africa
Myth 8
If a pregnant woman sees a person with Albinism, she should spit on
the floor 3 times otherwise the child she is carrying will be born with
Albinism.
This Myth is due to ignorance and misunderstanding about the genetic
nature of Albinism and has no scientific basic.
Myth 9
Albinos never die, they just disappear.
This myth has no basis, as persons with Albinism are normal human beings
with normal life span and also die like normal people.
Myth 10
Albinism is contagious and can spread from one person to another
through body contact or even with handshake.
This myth too is due to the ignorance about the genetic nature of the
condition
Dr.Choksey’s Recommendations on Bringing up
a child with Albinism
Diagnosis of Albinism at birth is crucial for the survival of an Albino
Child.
Doctors and midwives conducting the delivery must be aware of the
condition and should be able to make the diagnosis by looking at the eyes.
Counselling the parents and the family about the genetic nature of Albinism
is an important step at birth specially in Africa.
In early childhood, bringing up the Albino child as a normal child with
parental love and acceptance by the extended family and the society is an
important milestone in the lives of Albino Children.
Albinism and skin
The parents and the family must be made aware of the harmful effects of
exposure to direct sunlight on the skin of the Albino Children. In early
childhood the skin can be protected by keeping the child indoors during the
day, using protective clothing in the Sun and as well as Using Sunscreen
lotions with high Sun protection factor 30 and above.
Albinism and the Eyes
An Albino Child must be examined by an Ophthalmologist between 3 to 6
years of age. Prescription Photochromatic glasses must be provided before
the age of 7 years to improve and preserve sight.
Youth & Career Choices in Albinism
Most suitable professions for people with Albinism are those that are
pursued Indoors such as Teaching. Careers that must be avoided are
those which involve being outdoors, like farming.
Relationship and Marriage
Albinism can occur only if both Parents carry the gene of Albinism.
Persons with Albinism can marry someone who is not a carrier of the gene
and can have children with normal pigmentation.
Genetic counseling is important when there is Albinism in the family.
Time has come for the world to unite to ensure that Children with Albinism
are fully Integrated, Appreciated and Empowered to realize their full
potential and lead a life of dignity and honor as adults.
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