The Albino Foundation

Health Care and Life Experiences
HEALTH CARE

Albinos  And  Skin  Cancer
(photos)

Everyone who cares and reasons well ought to know and understand in very simple language the maters of Albinism, Albino and Skin Cancer. These issues face peoples the world over.

  • Albinism: 
This occurs in persons whose skin, eyes and hair lack Melanin (Tyrosine’s TXR) pigmentation producing substance in adequate quantities or near total absence. Research shows some basic differences in the African, Asian and European strains. However, they are all vulnerable to similar health, social and psychological challenges, which are becoming increasingly surmountable with more information, knowledge and affirmative action by all concerned.


Types:

  • OA- Ocular Albinism affecting only the eyes.
  • OA I   - Ocular, hair and skin Albinism – total  or  near absence of melanin.
  • OAII   - Pink eyes and brown reddish hair and  skin
  • OAIII  - Slats or ash-grey eyes, hair and skin –                            European strain
  • OAIV  - Silver eyes, hair and skin – European

PHYSICAL CHALLENGES:
  • Nystagmus:  Inability to maintain eye contact  caused by involuntary movement of the eyes.
  • Strabismus:  Misalignment of the eyes or squint.
  • Decreased Visual Acuity: Near sightedness.
  • Photophobia: Sensitivity to bright light.
  • Skin  Damage:  Due  to  excessive  exposure to        harsh  sunlight
  • Psychological Imbalances: Unhealthy behavioural  patterns in attempting to cope or deal with physical  and social issues.


  • SKIN CANCER:
Simply put, these skin sores are caused by the harmful effects of LIV-Ultraviolet rays of the sun. Cancer may be benign – early stages and curable if treated promptly or malignant – deteriorated state and medically incurable.

The Cancer Council New South Wales, Australia in a Newsletter, SUN SMART, published the following “Skin Spots to Watch. Your skin spots may vary from the examples shown.
For more advice on skin cancers  –  see  your  doctor.

  Melanoma:
  • A dangerous skin cancer that can be fatal if not diagnosed early.
  • Treated early, 95% of melanomas are cured. If untreated, cancer cells spread to other parts of the body.
  • Appears as a new spot, an existing spot, freckle or mole that changes colour, size or shape. Usually has an irregular or smudgy outline.
  • May be blotchy and more than one colour, brown, black, blue, red or grey.
  • Grows over weeks to months, anywhere on the body.

(b)NODULAR MELANOMA:
  • A highly dangerous form of melanoma
  • Can appear as a small, round or red in colour, resembling a blood blister.
  • Can feel firm to the touch, and, if neglected will begin to bleed and crust.
  • Grows quickly and can be life-threatening if not detected and removed promptly.
  • The lesion may be dangerous, and so more dangerous than appears on the surface.

(c)Squamous   CELL CARCINOMA:
  • Not as dangerous as melanoma but may spread to other parts of the body if not treated.
  • A thickened red, scaly spot. Later it may bleed easily or ulcerate.
  • Appears on sites most often exposed to the sun.
  • Grows over some months.
  • Any spot that appears on the lips or ears should be seen by a GP immediately.

(d)BASAL CELL CARCINOMA:
  • Most common and least dangerous skin cancer.
  • Appears as a lump or scaling area.
  • Red, pale or pearly in colour
  • As it grows it may become ulcerated like an unhealing sore or one that heals and breaks down again.
  • Grows slowly, usually on the head, neck and upper torso.

(e)Dysplastic Naevi:
  • Not skin cancer, but a warning that you may be more prone to melanoma.
  • Often fairly flat large moles, which share some of the features of early melanoma.
  • Characterized by irregular borders and uneven colour with multiple shades of brown and sometimes pink.

(f) SOLAR KERATOSES:
  • Not a skin cancer but warnings that the skin is prone to developing skin cancer.
  • Characterized by red, flattish, scaling areas, which may sting if scratched.
  • Sunspots appear on sun-exposed skin in the over 40 age group.

HARMLESS SPOTS

  • FRECKLES AND MOLES:
  • Freckles are harmless colored spots that range in size from 1 to 10mm.
  • Moles are evenly coloured and may be raised, although they do not have to be.
  • Moles have clear, even edges and are usually circular or oval in shape.

  • SEBORRHOEIC KERATOSES:
  • By the age of 60, most people have at least one or two.
  • They have a very discrete edge and frequently sit up on top of the skin.
  • Colour varies from pale skin through orange to black.
  • Size varies from a few millimetres to 2cm.

HOW  TO  SAVE  YOUR  SKIN
  • Slip on a closely woven, long sleeved shirt (natural fibres are coolest).
  • Slop on broad spectrum, SPF 30 + sunscreen that is water-resistant, 20 minutes before going outside and reapply every 2 hours.
  • Wear sunglasses to protect your eyes. Sunglasses should block out at least 95% of ultraviolet radiation (UVR)  and meet the Nigerian high heat standard.
  • Slop on a broad brimmed hat that covers the face, neck and ears. The brim should be 6cm for children and  8 – 10cm for adults.
  • Seek shade whenever possible – under trees, verandahs or shade cloths.
  • UVR levels vary throughout the day. They are highest from 10a.m. to 2p.m. (11a.m. – 3p.m. during daylight saving). UVR is still present at other times of the day, on cool or cloudy days.
  • In addition, stay out of the heat of the sun, it hurts very badly the albinos and even people of deeper colour.

Management of Albinism.
Albinos and their families often confront loneliness that can be more challenging than the albinism in their lives and in planning for the future. While albinos know intuitively that what will best serve their interest is acceptance and understanding by other members of the public, they fear that the society has no place for them. Fear of discrimination and rejection prolongs their anxiety and increase their risk of given up the pursuit of goals that will enable them live fulfilled and productive lives.

There is need to address the psychological challenges that albinos face. Albinos in cities and local communities are encouraged to form local chapters or groups that can act as a ‘family’ for each individual albino. Involving parents, other family members of albinos, school mates and the general public in albino activities or programmes will spring mutual understanding, tolerance and respect. Forming communities such as these, will help extend the reach of albinos to external audiences in order to educate the public about albinism, prejudices and individual and communal responsibility for albinos.

The Albino Foundation (TAF) has integrated the role of family and community members in the provision of appropriate services to albinos. By helping to establish relationships between albinos and various segments of the society, TAF prepares especially young albinos for the challenges ahead, how to deal with them and the process of social integration. TAF’s activities help to facilitate more direct contact with albinos and other members of the public, and increase the capacity to provide counselling and empowerment services. 

The care of persons living with Albinism is a global one. Hence there is the need to have an Albinism Registry to aid in advocacy, planning and meaningful intervention as regards relevant infrastructural facilities to be put in place.  The Federal Ministry of Health or a credible non - governmental organisation (NGO) may need to set up such an Albinism Registry.

Information on Albinism has to be updated and passed on to the members of the public and concerned families from time to time. Information on health care with emphasis on “Stay out of the sun” initiative because of the danger of skin cancer should be a priority.

Other tips to help albinos:
  • Integrate albinism awareness in the school curricula, especially to correct misconceptions about the cause of albinism
  • Educate counsellors in schools about albinism
  • Train health care providers at clinics and hospitals about albinism and the effects that UV exposure can have on this condition
  • Encourage community self-help support groups
  • Implement programmes to aid people with albinism in finding indoor occupations

LIFE EXPERIENCES
Statistics shows that a high percentage of over 600,000 Nigerian albinos suffer from similar kinds of discrimination from their families, school mates and peers etc.  The human tragedy implied by this is intensified when one realises that many of the Nigerian albino population have actually had their potential to lead productive lives ignored, and thereby destroyed due to the society’s approach to the issue of albinism.

As result of this, albinos tend to be more withdrawn from social situations to avoid being noticed. Many become more emotionally unstable and had less assertive personalities. Also, they consider the society to be generally unkind and rejecting. Much of the social discrimination appears to stem from the lack of education about the causes of albinism.

There is limited awareness of its genetic inheritance and therefore, traditional myths and superstitions abound in different parts of Nigeria, with some regarding it as a taboo with consequences as high as death of new born albinos and their mothers.  Other beliefs link albinism with (culturally unacceptable) conception during menstruation or consider albinism as a punishment from the gods for an ancestor's wrongdoing. Due to this socially rooted discrimination, the quality of life of people with albinism may be compromised. Many drop out of school and face more difficulty in employment and marriage.

Furthermore, family members of albinos also experience discrimination from their communities. In light of the traditional myths concerning the causes of albinism, mothers of affected children are usually accused of infidelity and subjected to a great deal of stigma and psychological distress. These traumatic experiences haunt albinos through out the rest of their lives.

Experiences of notable albino personalities who rose above these challenges are compelling:

Jake Epelle:

Growing up as an albino, Jake Epelle experienced an environment where he had to fight for survival. He was able to overcome taunts and all manner of discriminations in his immediate family, schools and workplace. He realized early in life that there is no place for an albino unless he makes it for himself. His interest grew wider when he realized that similar discrimination was routinely applied to all albinos. Believing in the power of change, Mr. Epelle believes that this change can be won for all albinos in Nigeria and indeed all over the world. Mr. Epelle has lived this principle in several competitive arenas where he had overcome all odds.  From being a broadcaster in the 80’s, a public relations consultant in early 90’s to a successful international businessman and founder of the Albino Foundation, Mr. Epelle has demonstrated that albinos need determination to overcome their plight.  He is challenging people’s attitude towards albinism by proving to non albinos that albinos are members of the society equal to them and should be regarded as such in every moment of their lives.



This page was last updated: June 18, 2007