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Friday, July 13, 2012

Albinism in Kenya

Albinism in Kenya

 By Lisa Wallace

I am a Clinical Nurse Specialist in dermatology, in Bradford, and after contacting the BDNG for advice was asked whether I would write about my recent experiences regarding the albino children my family and I met while on holiday in Kenya, East Africa. My aim is to briefly discuss albinism, the issues faced in Africa and what has happened so far in our attempts to raise awareness of their plight. I have decided not to go into great depth about the clinical aspects of albinism – although I have included a few facts that relate to African albinos – as I wanted to concentrate upon the personal aspects of my experience.

In 2009, a colleague and friend, Dr
Kate London (Consultant Dermatologist,
Bradford) spent a holiday at Turtle
Bay Beach Hotel, Watamu, Kenya and
became aware of a young albino
boy with apparently extensive scalp
malignancies, called Erick Ungule.
After further discussion with some
of the staff in the hotel, it became
apparent that there were also other
children in the local area that had
albinism, and a baby was actually born
during her stay.

What is albinism?
Albinism (also called achromia,
achromasia or achromatosis) is a
congenital disorder characterised by the
complete or partial absence of pigment
in the skin, hair and eyes due to absence
or defect of an enzyme involved in the
production of melanin.

Albinism is associated with
vision defects, such as photophobia,
nystagmus and astigmatism. Lack of skin
pigmentation makes the individual more
susceptible to sunburn and skin cancers

(Marshall Cavendish Corporation, 2007).
While rare in the UK, with one case
per 17,000-20,000 people, it is more
common in Africa, with one in 1,100
people affected (NOAH. www.albinism.

The issues that face African albinos
African albinos struggle to protect their
skin from skin damage in the intense
tropical sun – the cost of protective
sun hats and clothing is way beyond
their financial means.
Avoiding the sun is impossible
for those that farm the land, or even
children playing outside, and a lack of
education means that many do not
realise that the sun's rays cause damage
to the skin.

Consequently, second-degree burns
are not unusual and skin cancer can
develop in individuals from a young age.
It is not easy being an albino in Africa.
Many face social and cultural challenges,
as their appearance can be a source of
ridicule, fear and even violence. Due to the obvious different outward
appearance, folklore has developed
around these people, from harmless
myths to dangerous superstitions that
have even led to loss of life.
In other African countries, such as
Tanzania and Burundi, there has been an
unprecedented rise in witchcraft-related
killings of albino people in recent years
due to the belief that their body parts
can be used in potions sold by witch
doctors (BBC News, 2008, BBC News,

As recently as 2009 in Tanzania,
three men were convicted of killing a
14-year-old albino boy and severing his
legs in order to sell them for witchcraft
purposes (BBC News, 2009²).
In Zimbabwe, belief that sex with an
albinistic woman will cure men of HIV
has led to rapes (and subsequent HIV
infection) (Lewis, ipsnews.net).
When I broached these issues, the
general feeling was that the threat is not
so much the case in Kenya but there
were concerns that, as awareness of
these atrocities is heightened in other
countries, those that seek out the
albinos may cross the Tanzanian border
into Kenya.

The campaign to raise money
On Dr London's return to the UK,
money was raised by the Bradford Skin
Cancer User Group to buy protective
clothing, sun hats and sun cream for
these children, the arrangement being
that when we holidayed there in
2010 we would pass these on to be
distributed via the hotel (Telegraph
& Argus, 2010). This is how myself,
husband and 15-year-old son found
ourselves in the Timboni Community Clinic, as I felt it would be good to
meet the children, and obtain some
photographs to show the Skin Cancer
User Group members how appreciated
their fundraising had been.
If anyone has ever spent time in
Africa they will know what I mean
when I say it is a huge culture shock and
there is no comparison between our
healthcare resources and theirs.
The Kenyan healthcare system is
structured in a step-wise manner so
that complicated cases are referred to
a higher level and gaps in the system
are filled by locally-run private and
church clinics providing services for
simple ailments, such as common cold
and flu, uncomplicated malaria and skin

Medical care and medications are
not free and the cost is dependant on
the treatment required. Subsequently,
medical care is negligible and the
availability of sun screens almost nonexistent
– apparently one bottle of sun
cream can cost as much as ?25.
The clinic comprised three rooms
and we were proudly shown round
the facilities by the healthcare
workers. By our standards, these were
unbelievably basic: the walls were
concrete, one room had an examination
couch (for women to give birth)
and the pharmacy cupboard had
probably the same supplies that we
would find for an individual ward in
the UK.

This particular clinic provides services
at cheaper rates, and free services for
very poor individuals. I was shocked to
find that the average monthly salary of
a hotel worker in Kenya is 3,800 shillings
(equivalent to ?30).
It was here that we were taken
by Collins Obura (responsible for
coordinating charitable donations at the
hotel) and met an inspiring group of
African parents and their albino children;
it became apparent that Erick was not
the only person with albinism, and other
local children and parents also needed
support. Four boys, aged between two and five,
and their mothers travelled from nearby
villages and, although they probably
wondered what an earth a woman
from the UK was doing there, they were
pleased with the protective clothing,
hats and creams.

It became apparent that this could
become an opportunity to work with
these families and the healthcare
workers. Harrison, Erick's father, one
of the healthcare workers at the clinic,
suggested that the clinic could be used
as a base to distribute sun creams and
advice for the other parents.

Harrison volunteered for this, as
he had already managed his own son
(Erick), who at 15 was older than the
other children, and felt he could advise
about early sun protection and other

The ideas came thick and fast,
and I soon realised that our roles in
dermatology in the UK could open up
so many avenues for these children.
Several ideas were put forward:
8 A charity would be registered as the
Albino Children of Watamu, Kenya
so that any funds raised when back
in the UK could be donated.
8 This charity would be adopted as
one of the community projects
supported by Turtle Bay Beach
Hotel, Kenya (http://www.turtlebay.
8 On my return to the UK I would
look into the possibility of
other charitable organisations'

Back to the UK
After we left the clinic, if I'm truthful
I felt overwhelmed – but optimistic,
and this was in part because of the
enthusiasm of Harrison, a father who
wanted the best for his son, Erick.
Before leaving Kenya, we had met
Erick; Erick had already had a squamous
cell carcinoma removed from his scalp
and a skin graft from his thigh, in 2009.
His father told us this surgery was
performed in Nairobi (a three-hour
drive away) and had required a 5-week stay in hospital, during which his father
had to remain with him.
Erick had other areas of
pigmentation and what appeared to be
another squamous cell carcinoma to
his scalp, as well as other areas of sun
damage to his scalp/face and arms. The
histology that was eventually sent to
me from his father was dated January
2010; Erick had had this diagnosis for 8

As mentioned, health care in Kenya
is not free, and the estimated cost of
surgery is ?800 – an amount well
beyond Erick's father's means.
After meeting Erick in person, this
made us even more determined to
raise funds and support in any way we
could. Unbelievably, within the last week
of our stay the charity was officially
registered and its constitution written.
And so the story continues
At the moment we are in the early
stages of fundraising, from jewellery
parties to table-top sales, and even a
five-a-side football tournament. On my immediate return,
communications were frustratingly
difficult as internet access in Kenya is
precarious. However, we hope that
this project will become a long-term
commitment and have had to accept
that, although it feels as if there is little
progress at present, the long-term plan
will be effective.

We had hoped to bring Erick to the
UK for treatment, but this raised issues
such as accommodation, travel, etc, and
we are not sure if it is something we
could realistically offer children in the

Another option may be to provide
education for the local doctor, who
could then cascade this to local
healthcare workers in the clinics,
and we could have several placed
to provide education. We are also
in the process of contacting several
charities to see if they can suppor t this
charity in any way. One such charity
– Stichting Afrikaanse Albino's (in
the Netherlands) – which suppor ts
albinos in Malawi, Africa, has offered
a regular supply of sun creams and
we are in the process of arranging
a way of transpor ting these to the
health clinic so that Harrison can
distribute them. The Stichting Afrikaanse
Albino's charity has a very informative
website that's well wor th a look. www.

We have also developed a group on
Facebook called the “Albino children of
Watamu”. This has proved useful for the
parents in Africa, who can access it via
Harrison, Erick's father, who fortunately
has internet access.

The International Skin Care Nursing
Group has also been contacted. This
group aims to raise the profile of skin
health for the world's population and
the contribution that nurses can make
in this area (www.isng.org).
Despite the limited resources available,
I was humbled at the enthusiasm shown
by the parents and the healthcare
workers at the clinic, and if anyone has
any ideas or suggestions we can be
contacted on: 

Dr Kate London – Consultant Dermatologist
Lisa Wallace – Clinical Nurse Specialist in Dermatology
Dermatology Out Patients Department
St Luke's Hospital
Little Horton Lane, Bradford
West Yorkshire, BD5 0NA
Tel: 01274 383736

You can find out more about
albinism/skin cancer/protection by
accessing the following web pages:

>> http://www.albinism.org/
>> http://www.sunsmart.org.uk/index.htm
>> http://www.albinismfoundationea.com
> >www.afrikaansealbinos.nl
>> Albino children, Watamu, Kenya –Watamu children Facebook page

Albino Children, Watamu, Kenya (2010)
Facebook Group.Our Facebook page
(accessed 25/10/10)
BBC News (2008) Living in Fear: Tanzania's
albinos (21.7.08). http://news.bbc.co.uk/1/
hi/world/africa/7518049.stm (accessed
BBC News (2009¹) Burundian albino
murders denied (19.5.09). http://news.
(accessed 1.10.10)
BBC News (2009²) Death for Tanzania
albino killers (23.9.09) http://news.bbc.
(accessed 1.10.10)
Machipisa L (2002) The Last Minority
Group to Find a Voice. Inter Press Service
News Agency.
asp?idnews=14122 (accessed 1.10.10)
Marshall Cavendish Corporation (2007)
Diseases and Disorders, p29. New York
NOAH (The National Organization for
Albinism and Hypopigmentation) www.
albinism.org (accessed 25.10.10)
Telegraph & Argus (2010) Bradford Royal
Infirmary event to raise awareness of skin
cancer (28.6.10)
cancer_fund/ (accessed 15.10.10)
Turtle Bay Beach Hotel, Watamu, Kenya
projects.html (accessed 25.10.10)
Figure 6. Erick's scalp, showing pigmentation and a
possible second squamous cell carcinoma.
Figure 7. Erick Ungule and Joe Wallace.

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