Albinism in KenyaBy 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. org).
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. Discrimination 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, 2009¹).
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 conditions.
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 matters.
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. co.ke/community_projects.html). 8 On my return to the UK I would look into the possibility of other charitable organisations' involvement.
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 months.
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 future.
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. afrikaansealbinos.nl.
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:
>> Albino children, Watamu, Kenya –Watamu children Facebook page
References 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 18.10.10) BBC News (2009¹) Burundian albino murders denied (19.5.09). http://news. bbc.co.uk/1/hi/world/africa/8057956.stm (accessed 1.10.10) BBC News (2009²) Death for Tanzania albino killers (23.9.09) http://news.bbc. co.uk/1/hi/world/africa/8270446.stm (accessed 1.10.10) Machipisa L (2002) The Last Minority Group to Find a Voice. Inter Press Service News Agency. http://ipsnews.net/interna. 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) http://www.thetelegraphandargus.co.uk/ news/8242807.Flower_power_will_help_ cancer_fund/ (accessed 15.10.10) Turtle Bay Beach Hotel, Watamu, Kenya http://www.turtlebay.co.ke/community_ projects.html (accessed 25.10.10) Figure 6. Erick's scalp, showing pigmentation and a possible second squamous cell carcinoma. DN Figure 7. Erick Ungule and Joe Wallace.