Download Albanism Awareness Health Byte 2016

HEALTH BYTES
Looking after you… Keeping you informed …Keeping you up-to-date
Albinism Awareness
MYTHS THAT NEED TO BE STOPPED
Albinism is ONLY about having less pigmentation. Albinos are
normal human beings in every other way:
 they do not bring bad luck
 they are not cursed
 they do not transmit magical powers
Help to stop albinism persecution - visit
www.underthesamesun.com
SKIN & EYE PROTECTION IS KEY!
Baraka Cosmas Rusambo, six, lost his right
hand to a witchcraft-related attack in
Tanzania because he has albinism.
Photos: TNS
Because of the lack of
pigments, the eyes and skin
of people with albinism are
very sensitive to light.
Due to this sensitivity they
may develop sores on their
skin that could develop to
skin cancer.
To protect the eyes and skin
from the harmful effects of
the sun it is recommended
that people with albinism:
 Keep out of the sun
especially between 11h00
to 14h00. Use lip protection
cream of at least SPF 30.
Wear long sleeved cotton
shirts and blouses with high
collars
 Wear long trousers and
slacks whenever possible,
to protect the legs.
 Use large brimmed hats.
 Use sun barrier cream with
a sun protection of at least
SPF 30 on sun exposed
areas.
 All (100%) albinos suffer
from some form of visual
impairment and there
often are not sufficient
educational facilities,
learning supplies or funding
to support children with
limited sight.
Albinism is an inherited genetic disorder in
which the body fails to produce enough
melanin. Because of the lack of pigment,
the affected person has very pale skin,
white or sand-coloured hair, and light
brown or even blue eyes.
The various shades or color of human skin are
determined by the amount of melanin
(pigment) in the skin.
Without melanin, the skin is pale white with
shades of pink caused by blood flow through
the skin. Fair-skinned people produce very
little melanin, darker-skinned people produce
moderate amounts, and very dark-skinned
people produce the most. Usually, melanin is
fairly evenly distributed in the skin, but
sometimes people have spots or patches of
skin with more melanin. Examples of such
spots include freckles, age spots (lentigines),
and melasma.
Melanin is produced by specialized cells
(melanocytes) that are scattered among the
other cells in the top layer of the skin called
the epidermis. After melanin is produced, it
spreads into other nearby skin cells.
“I have a dream that one day people with albinism will
take their rightful place in every level of society, and
that the days of discrimination will be a faint memory!”
- Peter Ash, Founder / CEO of Under the Same Sun
OCSA Head Office: T (011)803-3538 | Block B Eden Park, No 4th Ave, RIVONIA | www.ocsa.co.za
HEALTH BYTES
Looking after you… Keeping you informed …Keeping you up-to-date
Help to stop albinism persecution - visit www.underthesamesun.com
Under the Same Sun, founded by Peter Ash, is an
organization aiming to protect albinos from persecution.
Peter Ash delivered an oral intervention to the Human Rights
Council on 7 June 2013 on behalf of the East and Horn
of Africa Human Rights Defenders project (EHAHRDP).
"Today I wish to address a little known but very serious
human rights violation being perpetrated against
people with albinism in many African nations. My
NGO, Under the Same Sun, has evidence of witchcraft
related attacks and killings of 207 people with albinism
in 16 African nations. The majority of the victims are children.
From Tanzania and Burundi in the East, to Nigeria and Cote
d'Ivoire in the West and South Africa and Swaziland in the
South, people born with this genetic condition live in fear
every day.
There exists a lucrative black market in albino body parts
used to make what is promoted as powerful 'muti' medicine.
The hand, arm or any albino organ is combined with other
ingredients and then sold for thousands of dollars:
$3,000 for a hand or over $100,000 for an entire set
of organs. Sometimes body parts are even shipped
across borders. We seek a day when people with
albinism will take their rightful place in all levels of
African society and such days of discrimination will
be a faint memory. To this end, we call on this
Council to pass a resolution condemning acts of violence
and discrimination against persons with albinism and to
request the OHCHR or the Advisory Committee to carry out
a study on such violations. As Edmund Burke so rightly stated,
"all that is necessary for evil to prevail is for good men to do
nothing."
RECENT RESEARCH
A precise classification system for
albinism is now available. DNA - the
chemical that encodes genetic
information, was analysed to group the
enzymes or genes involved. Seven forms
of oculo-cutaneous albinism (OCA) are
now recognized: OCA1 - OCA7.
 OCA1, or tyrosinase-related albinism,
results from a genetic defect in an
enzyme called tyrosinase. This enzyme
helps the body to change the amino
acid, tyrosine, into pigment. (An amino
acid is a “building block” of protein.)
There are two subtypes of OCA1. In
OCA1A, the enzyme is inactive and no
melanin is produced, leading to white
hair and very light skin. In OCA1B, the
enzyme is minimally active and a small
amount of melanin is produced,
leading to hair that may darken to
blond, yellow/orange or even light
brown, as well as slightly more pigment
in the skin.
 OCA2, or P gene albinism, results from
a genetic defect in the P protein that
helps the tyrosinase enzyme to
function. People with OCA2 make a
minimal amount of melanin pigment
and can have hair color ranging from
very light blond to brown.
 OCA3 is rarely described and results
from a genetic defect in TYRP1, a
protein related to tyrosinase. People
with OCA3 can have substantial
pigment.
 OCA4 results from a genetic defect in
the SLC45A2 protein that helps the
tyrosinase enzyme to function. People
with OCA4 make a minimal amount of
melanin pigment similar to people with
OCA2.
 OCA5–7 are considered to be
uncommon and is caused by
mutations on three additional
causative genes and were identified
in humans in 2012 and 2013.
 Researchers have also identified
several other genes that result in
albinism with other features. One
group includes at least nine genes
leading to Hermansky-Pudlak
Syndrome (HPS). In addition to
albinism, HPS is associated with
bleeding problems and bruising.
Some forms are also associated with
lung and bowel disease. HPS is a less
common form of albinism but should
be suspected if a person with albinism
shows unusual bruising or bleeding or if
a genetic test for a type of OCA
produces inconclusive results. Other
albinism-related syndromes
nclude Griscelli Syndrome and
Chediak-Higashi Syndrome.
Melanocyte
www.merckmanuals.com/home/skin-disorders/pigment-disorders
www.wikipedia.org/wiki/Persecution_of_people_with_albinism
www.albinism.org
OCSA Head Office: T (011)803-3538 | Block B Eden Park, No 4th Ave, RIVONIA | www.ocsa.co.za