albinism and melanocytes

Cambridge 2000 joint IMI/MAA conference holds a special memory for me because I was one of the 'New Voices'. I spoke about my research into the condition of albinism and the intriguing world of cell biology and ophthalmology that opened up to me.

I've been fascinated by albinism for many years, dating back to when I was a fine art student in Belgium. I found myself more interested in the absence of pigment rather than in colour, a strange thing for a painter coming from a heritage of Flemish painting with such a rich colour palette. It was this interest that first drew me to albinism. I found the physical appearance of a person with albinism aesthetically very beautiful. As time went on I became increasingly curious about the medical, biological and genetic causes of albinism. Thus when I started studying the MAA course I was fortunate to have a project in mind that I really wanted to explore in depth.
I found I was not alone with my interest in albinism, and over the years I have met many professionals, from all walks of life, exploring their own interest around this subject. Rick Guidotti, an American fashion photographer who I met at the Blackpool Albinism Conference, called his project "Positive Exposure". People with albinism often have a lack of self esteem - Rick recognised this and now travels the world in search of people with albinism, to photograph them and to convey a positive image to the general public. He too was fascinated by the silent beauty of this condition.

I learned about the Albinism Fellowship , an organisation that provides support and advice for people with albinism and their families. The first conference that I attended was in Glasgow, where I was welcomed by Mark Sanderson, the president of the fellowship, who helped me a great deal in my research and with my projects. I found myself among very friendly, charming and warm people, but like Rick Guidotti, I felt there was a certain lack of self-esteem, especially among the teenagers. The parents of babies born with this condition also had a lot of concerns and questions. From this first meeting the idea sprung forth of creating an informative booklet. { Figure 1} As this booklet began to unfold, I realised that every aspect of explaining albinism would take me into new avenues of research. I decided to begin with the pigment cell.

Melanin pigment is made in a specialised cell called the melanocyte. I needed to know what this cell looked like , so I studied the cell under the microscope and electron-microscope, and made several paintings and illustrations. I felt however that I still did not understand exactly what the cell looked like, so I decided to make a sculpture of a pigment cell in order to discover and explain in three dimensions, exactly how melanogenis works {figure 2}. I exhibited the organelles of this cell sculpture at the Blackpool conference and was delighted when a mother of a child with albinism said that through studying my sculpture, she finally understood exactly what was the cause of her child's condition. She said that my work helped her a great deal and I found this the best compliment of all!

Melanin affects not only the skin and hair, but also has a profound effect upon the eyes. There are a range of eye problems people with albinism may experience. The lack of pigment in the retina and in the iris of the eye causes reduced vision and photophobia. There may also be strabismus(squint) . and as a result of these eye problems there is almost always nystagmus (involuntary rhythmic oscillation of the eye) iris translucency is always present.

I am happy that I followed my instinctive attraction to albinism- it has introduced me very gently to complex and fascinating sciences and enabled me to meet so many interesting people.