Being an albino is a tough life in the hot African Sun,not to mention being preyed upon by witches who believe the body organs of albinos have special powers that they use in rituals and human sacrifice.

There is also the stigma of being ‘white’ in a vast mass of black african population as well as the superstitions attached to albino children in an african family.

Albinism is a disorder characterised by the complete
or partial absence of pigment in the skin, hair and
eyes due to absence melanin, a dark brown or black
pigment that is naturally present in varying degrees
in humans.
The pigment absorbs ultra-violet rays which are
injurious to skin, and since people with albinism lack
it, they have little protection from the dangerous
rays.
There are two types of albinism; oculocutaneous,
which affects the eyes, skin and hair; and ocular,
which affects the eyes only.
According to Dr Kevin Muriu, a general practitioner at
Primecare Health Services, the vast majority of
albinism affects the eyes.
The lack of pigmentation on the iris causes people
with the condition to commonly develop photophobia
(sensitivity to bright light), refractive errors needing
correction with spectacles, and loss of depth
perception.
“Also, people with albinism, due to the lack of
melanin in their skin, are more susceptible to skin
cancer.
This means that the dose of sunlight that causes one
to have skin cancer is much lower for people with
albinism compared to normally pigmented people,”
says Dr Muriu.
Although there are thousands of people living with
albinism in sub-Saharan Africa, little research has
been done on the type of cancer it spawns.
What has, however, been established is that the
biggest gap in care of people with albinism is the
lack of sunscreen, which goes a long way in skin
cancer prevention.
“If a person with albinism uses sunscreen from birth,
there is a good chance that he or she will not develop
cancer. It is a simple thing, but very expensive, with
many people affected living below the poverty line
and thus unable too afford it,” says Dr Muriu.
DN2 sought to chronicle the progression of cancer on
people living with albinism, from the slightly affected
to the terminally ill. Our research introduced us to
lots of people, from infants to the aging. Here, the
four stages of albinism, and what needs to be done to
save the situation:
STAGE 1
When Austin Kinyanjui was born 14 months ago, the
first thing his mother noticed about him was his
white hair, which set him apart from all the other
children.
She was bewildered and could not understand why
her son was different. Even the nurses at St
Theresa’s Hospital in Kikuyu were perplexed; saying
they had never seen anything like it.
It was only six months later, while Wambui was
taking Austin’s elder brother George to hospital for a
few check-ups, when a doctor stopped her after he
spotted little Austin.
“We were at Mbagathi District Hospital when we met
a doctor who told me that Austin had albinism. He
advised me not to expose him to the sun as his skin
is very sensitive.
The doctor also gave me two bottles of sunscreen to
use on my son and told me that I needed to take him
to see a skin specialist,” says Wambui.
Therefore, at six months, Austin started using
sunscreen on his skin and has used it ever since. His
mother has also taken him to an eye specialist, who
confirmed all is well, even though Austin will have to
use spectacles as soon as he clocks four.
“I also took him for cancer screening last month and I
am happy to report that his skin is perfect. The
doctor however told me to watch out for any scars on
his skin and ensure I go for frequent medical check-
ups,” says Wambui.
The doctors advised Wambui and her husband
Fredick Muthua to ensure that Austin uses sunscreen
lotion to protect his skin from dangerous ultraviolet
rays. People living with albinism are at a higher risk
of developing basal cell carcinoma (skin cancer) and
are required to wear protective clothing and also use
sunscreen.
“A bottle of sunscreen costs Sh1,800 and this lasts
for three months as we only apply it on Austin as he
goes out in the sun,” says Wambui.
According to Dr Kevin Muriu, a general practitioner at
Primecare Health Services, if a person with albinism
uses sunscreen from birth, there is a good chance he
or she will not develop cancer.
“It is important that a person with albinism uses
sunscreen with a Sun Protection Factor of 35 and
above. They must apply daily and evenly over their
entire skin surface, or at the very least on the sun-
exposed areas of skin,” says Dr Muriu.
STAGE 2
Damaris Nzisa is a Form Three student at Thika High
School for the Blind. She is the first born of two
children and her parents live in Kitui. Like Austin,
Damaris’ condition shocked the entire village, and
her parents were at a loss on what to do with a child
with albinism.
“Growing up in Kitui was very tough,” she says. “The
sun there is too hot and because my parents did not
understand my problem, I constantly found myself
under the hot sun, which was not good for my skin.”
Luckily, Damaris caught the attention of a good
Samaritan — Mary Makau — who was kind enough to
take her in and live with her in Nairobi.
For most of her childhood, Damaris was exposed to
the dangerous sun rays and only began using
sunscreen lotion when she was 12 years old.
“I heard on radio that some people were donating
sunscreen lotion to a local health centre and my
friend helped me to get the lotion. It has greatly
improved my skin,” says Damaris.
About two months ago, Damaris underwent skin
cancer screening and, luckily, the doctors re-assured
her that she was cancer free, save for a few sunburns
on her face.
As a young adult with albinism, Damaris is very
conscious of her body and her looks. Her self-esteem
has taken several blows due to the fact that she is
‘different’ from other young women her age, but she
remains positive of her condition.
“Sometimes I look at my face and get discouraged
because of the sunburn marks. I however hear people
say that I have a beautiful smile and a good figure,
which cheers me up. I have learnt to live with the
unwarranted attention and curious stares I get
everywhere I go,” she says.
Skin cancer is basically the failure of the normal
healing mechanism after skin tissue is damaged, and
happens when the injurious ultraviolet rays from the
sun affect it. This could be as a result of large dose of
sun exposure at one point or over a long period of
time.
It can affect both those with normal skin
pigmentation and those with albinism, but people
with albinism are at greater risk of developing skin
cancer given the absence of the protective melanin in
their skin.
So far, Damaris remains ‘safe’ as far as skin cancer in
concerned, even though her skin was exposed to the
sun for a long time prior to using sunscreen.
STAGE 3
At 60 years, Naftali Ondusu is defying the myth that
people with albinism can only live up to the age of 40
years. But he considers himself a fighter, having
lived six decades with albinism. When he was born,
his mother received a lot of unsolicited advice from
all quarters concerning her ‘white baby’.
“Some told her to sell me. Others suggested that
they should kill me. But I thank God for my mother,
who refused to let me go and raised me to be a
strong man,” he recalls.
Growing up in Kisii’s Sameta area, Onduso bore the
brunt of being the different one in the pack. Teachers
and fellow students shunned him like a plague, but
that only made him stronger and more resilient.
The father of eight — none of them with albinism —
only discovered sunscreen last year, but it was too
little too late since he was already experiencing the
early stages of cancer.
“I was diagnosed with skin cancer in 2012. I thought
it was a normal disease, but how wrong I was. It is
painful. The breaking and peeling of skin is
excruciating and the scars are getting worse,” he
says.
“The doctors have not given up on me, so I will not
give up just yet,” he says “I am told it is not too late
to apply sunscreen, dress in long-sleeved shirts and
avoid the scorching Kisii sun. Since I am retired, I
have resorted to farming, but I only go to the farm in
the morning before it gets too hot and retire to the
house in the afternoon,”
The first stage of skin cancer is the premalignant
lesions.
These are growths that appear on the skin surface
that can develop into a skin cancer. The lesions may
look like rough, red or brown, scaly patches on the
skin that occur in areas that have been exposed to
the sun.
They are often found on the face, hands, and arms. If
the pre-malignant lesions are not addressed, they
often progress into malignant lesions.
However, for persons with albinism who have
developed pre-malignant lesions, there is still hope,
surgery can be done to excise these lesions in order
to avert skin cancer.
“It’s never too late to seek medical care,” says Dr
Muriu. “The pre-malignant lesions can be surgically
removed.”
STAGE 4
Thomas Mwaisaka has full blown skin cancer. He has
a large tumor on his neck, which he complains is very
painful and itchy. Part of his skin is peeling, and
Thomas is in need of serious medical care.
“It all started in July 2012, when I had an itchy spot
on my neck. Soon after, the skin started peeling off. It
was very painful,” he recalls.
In January this year, he was taken to Pandya
Memorial Hospital in Mombasa for surgery but that
did little to stop his skin from peeling. Thomas then
sought help at Marangu Hospital in Tanzania, where
he was admitted for a whole year.
A peasant farmer in Bura, Taita where he lives with
his wife and child, Mwaisaka has spent most of his
life outdoors in the sun, eking a living from farming.
He only began using sunscreen two years ago, but it
was too late since the cancer had already developed
to an advanced stage.
For now, he cannot work and has been reduced to
staying indoors as his wife toils to bring home the
bacon. Doctors confirmed that the skin cancer was
advanced and have put him on medication.
Dr Muriu says the tumor is the end result of a process
that, if caught in time, could have potentially been
arrested. Skin tumors generally present with pain,
inflammation, itching and even superimposed
infection.
“As the tumor grows, it outgrows its blood supply.
The skin dies off, resulting in an ulcer. Because the
skin is broken, it may become infected. Such
advanced tumors may need to be debulked to reduce
their size and alleviate some of the symptoms they
may cause by pressure effects on the surrounding
tissues ,” says Dr Muriu.
Such tumors can spread to the surrounding areas,
including the brain in a process known as metastasis.
A tumor can be removed surgically but with a wide
margin of normal tissue.
It, however, gets complicated when it spreads to
sensitive areas such as the neck, like in the case of
Thomas.
“Primary prevention is the most important step and
this includes limiting sun exposure, use of sunscreen
and regular screening for malignant and pre-
malignant skin conditions. It is never too late to start
using sunscreen and people with albinism need to
consult a doctor in case of any suspicious tumors.
Early recognition and subsequent treatment can
provide a cure in many cases,” says Dr Muriu

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