Those with OCA2 can make a small amount of pigment and thus may have light blond to brown hair color. Their irises are blue to light gray and their pupils dark red to light gray.
How does this lack of pigment in the eyes affect vision? People with albinism are legally blind because photoreceptors cells in the retina that detect light get oversaturated with light and send confusing messages to the brain. If you look at a person with albinism, you'll see a nystagmus , or fluttering, in their eyes; the eyes are sort of bouncing in their sockets because they are getting a confusing visual stimulus.
What are some other conditions associated with albinism? Without pigment in the skin, you are more susceptible to non-melanoma skin cancers in keratinocytes. Normally, melanocytes distribute pigment molecules to keratinocytes, where they act sort of like umbrellas shielding the nucleus and the DNA inside from the sun's UV radiation.
Albinos are particularly at risk for squamous cell carcinoma , a cancer of the outermost layer of skin, and basal cell carcinoma affecting deeper layers. They also may experience premature skin aging. Melanin helps prevents wrinkles and elastosis breakdown of elasticity by blocking UV radiation. Are there any treatments for albinism? No, there are not. Patients with albinism are advised to protect themselves from the sun.
Are there any treatments in the pipeline? Some researchers, such as Richard King at the University of Minnesota , are trying to develop gene therapies, or drugs that would go into the cells and correct DNA mutations responsible for albinism. So far, scientists have had some success in correcting patches of depigmented skin and hair in mice, but they are a long way from translating this research to humans. What animals, besides humans, can be albinos? Any animal that has melanocytes can get albinism.
That means virtually all mammals. Reptiles, amphibians and lower vertebrates can also be albinos, but these organisms may also have other types pigment production cells besides melanocytes, so they may not appear colorless.
According to Williams et al. Data were collected via semi-structured interviews for the students with albinism and for those without. Initially the plan was to interview 10 persons from each group. However, because of the limited number of albino students, it was only possible to recruit five persons with albinism for participation in the study.
Participants with albinism were recruited through non-probability purposive sampling. A purposive sample is purposively selected by the researcher based on the researcher's judgement Babbie The first author consulted with the director of the Disability Unit at the university who allowed her to put up posters to inform students with albinism about the study. The other sampling procedure utilised for the students with albinism was snowball sampling, a technique that begins with a few relevant participants and extends participation through referrals Babbie Non-probability availability sampling was utilised to recruit students without albinism.
The researcher approached people at the student centre and those sitting on the library lawns and invited them to participate in the study. The weakness of this sampling procedure is that it lacks scientific rigour and does not allow for generalisation of findings. However, there was minimal interest in participation amongst students without albinism and it is possible that some students might have been reluctant to reveal their lack of knowledge regarding the condition.
The process of thematic content analysis was utilised to analyse data from the interviews. The process of data analysis followed the steps recommended by Terre Blanche et al. Permission was granted by the Disability Unit of the university to conduct the study and ethical clearance was obtained from the university's non-medical ethics committee.
Indirect benefits included the enhancement of knowledge gained from the study. Potential participants were assured that participation was voluntary and that they had the right to withdraw from the study without negative consequences. Participants were given an information sheet explaining the purpose and procedures of the study and their rights as research participants. Thereafter, they signed informed consent forms. All information was kept confidential and no identifying details were included in the final report.
They were assured that all raw data would be kept in a locked cupboard for two years following any publications and for five years if no publications emanated from the study.
Thereafter all raw data would be destroyed. In order to enhance validity and reliability of data collection a pre-test of the research tools was conducted with one student with albinism and one without who were excluded from the final study. Based on recommendations from the pre-test, both interview schedules were amended accordingly. All interviews were conducted by the first author. In order to further enhance the trustworthiness of the data, the four constructs of credibility, dependability, confirmability and transferability were taken into consideration Trochim The researchers endeavoured to enhance credibility or plausibility of the study by providing a detailed theoretical framework, aligning the questionnaires with the theoretical framework and by pre-testing the research tool.
In order to enhance dependability or replicability of the study the same questionnaires were given to all the participants by the same researcher.
However, the use of a small, non-probability sample precluded transferability or generalisation of the findings to the broader population of persons with albinism or university students. In terms of confirmability, an objective independent colleague checked the categorisation of themes presented by the primary researcher for correspondence.
After reaching agreement on the themes, these were quantified. Results are presented in accordance with three areas of analysis highlighted by Herek , namely, the subjective experience of persons with albinism, the knowledge and attitudes towards albinism of persons without albinism, and the interaction processes through which the two groups negotiate their respective roles in social interaction.
Thereafter, the view of both groups are presented regarding the way forward. For participants with albinism, understanding of the condition was based on how it had affected their lives and their own personal experiences with the condition. Three of the five participants understood the condition of albinism based on medical aspects.
In contrast, two out of the five participants expressed their understanding and knowledge of the condition of albinism based on how the environment had treated them and how they were perceived by others. This theme was captured in the following verbatim quote:. Participants living with albinism reported having experienced discrimination from people without albinism. They felt that they were seen as outcasts and most of the time they had to prove that they were normal people and that they could do things and achieve as well as people without albinism.
This was encapsulated in the following statement:. The participants informed the researcher that their friends and neighbours or people who knew them treated them well and made them feel comfortable and normal. However, with strangers it was difficult and they did not like being in such environments because people tended to stare at them. Racial stereotyping was evident in the following response:.
Participants with albinism also reported being aware of beliefs regarding it. One participant mentioned that he had heard that in Uganda they chopped off the heads of people with albinism and used these body parts for muti [traditional medicine]. Another participant stated that she had been told that when people with albinism died they turned into salt and they were only buried at night and not during the day like everyone else.
The remaining three participants had heard stories about using bones from people with albinism for good luck and muti , as well as identifying them as a curse on the family and a punishment from God.
Three out of the five participants with albinism appeared to have been negatively affected by the stereotypes and beliefs around albinism as reflected in the following statement:.
However, the remaining two participants reported that these stereotypes did not exert much of an effect because of the support from their families and loved ones. Three out of the five participants reported experiencing some childhood challenges because of the people in their communities. For one participant, childhood was not affected in any way.
It was only when she was older that she understood what was said about her so that she had to take extra care of herself just to prove that she was normal. However, for the other participant, growing up was not difficult because of the confidence that she had gained from the support of family and friends. Three of the ten participants without albinism showed no knowledge and understanding of the condition, as encapsulated in this response:.
Five of the participants without albinism showed some knowledge without fully understanding the condition, having heard about albinism through the media and from other people. For example:. The remaining two participants without albinism showed in-depth knowledge of the condition from the subject, Life Orientation, which had been taught at primary and high school and from their relationships with people with albinism.
One of them stated that as a result of constant interaction with a person with albinism:. It is a lack of melanin, and if you have a lot of it you are darker and if you have a small amount you are lighter. Albinos do not have it and for me I see it as more of a skin condition rather that a disease. From the study it emerged that 9 of the 10 participants without albinism did not have any relatives with albinism and only two participants reported having friends with albinism.
The one participant explained his relationship with a few people in his life who had albinism as follows:. Like my pastor at church, he is a father figure to me and I look up to him, and I also have a friend whom I consider to be my brother because we are very close.
The other participant reported that she had never had an albino friend or relative but her mother used to have a close friend with albinism at nursing school. Consequently, she developed an interest in learning about the condition because when her mother told her about her friend she had emphasised the latter's beauty and generosity.
When the participants without albinism were asked if they would date a person with albinism, 6 of the 10 participants said they would not do so. One student commented:. Only one participant stated that she would be prepared to have a relationship with a person with albinism.
She commented:. I would judge a person by their attitudes and their behaviour. The remaining three participants had mixed emotions about dating people with albinism.
The influence of cultural beliefs and practices was captured in the following response:. I regard them as normal people. When the participants were asked if they would make friends with people with albinism, 9 of the 10 replied in the affirmative, based on the belief that they were human beings just like everyone else; however, they would not have intimate relations with them.
It emerged that all 10 participants without albinism were aware of beliefs and stereotypes regarding albinism as reflected in the following quotes:. In Tanzania, they believe that albinos have magical powers. If you kill an albino and you have a bone you can get rich. The private part of an albino, the blood, hair and flesh will make you rich and help you get a promotion at work.
I also remember a testimony of a woman from Tanzania, who is the first woman with albinism in parliament. Nine of the ten participants without albinism reported having no relationships with students with albinism. They attributed this to the fact that there were only a few students with albinism at the university where the study was conducted and hence they did not attend the same lecture courses or move in the same circle of friends with them.
This theme was captured in the following statement:. They are very few and they usually exclude themselves from the rest of the other students. One participant had a relationship with a student with albinism because they were in the same student residence. They had initially started their relationship by greeting each other, and had subsequently become mutual friends.
Of the five participants with albinism who participated in the study, three reported negative experiences of being a university student. In class it was sometimes difficult for them to read lecture notes and writing on the board, and they did not want to continually depend on the other students.
However, the remaining two participants acknowledged that if they did not know people and if they were not confident then it was hard for them.
However, it helped if they were confident and they avoided unfamiliar environments where their friends were not present. Challenges included fitting in with the rest of the population and other students, keeping up in lectures because of the difficulty of reading lecture notes, being excluded by other students and other students staring at them and talking about them behind their backs.
It emerged that the social environment played an important role in shaping their behaviour. The participants stated that at school, if the other students treated them badly and teased them about their skin colour and their eyes, they would have negative thoughts and emotions about who they were. For example, their family and friends would always offer to share things like an umbrella or skin protection lotions without considering that they had the means to take care of their skin.
Nine of the ten participants without albinism reported that they found it easier to make friends with students who did not have albinism, because there were far more students without albinism at the university and the students with albinism tended to distance and exclude themselves from the other students.
However, one participant stated that it was taboo to have a friend with albinism and because of the stereotypes around albinism: people would stare at you if you had a friend with albinism. I felt like I was a betrayal to my race. My mom had more practical fears, like whether I'd get sun damage if she let me go outside.
The complete absence of melanin in my skin means I don't tan-I just burn, baby, burn. Any time I went to a family reunion or church picnic, she'd slather me with sunscreen and make me wear a hat. During recess, I had to sit in the shade. When I was in fourth grade, my mom wrote a note to excuse me from field day, but I didn't give it to my teacher. Instead, I played all day under the hot sun. When I got in the car after school, my mother noticed that my face was red.
I tried to lie my way through it, but my face kept getting redder, and my body started blistering. I didn't go to school for a week because I was so sick. My health issues pretty much guaranteed I'd never be one of the cool kids. I hated having to wear a hat. And more than anything, I hated the questions I got about my eyes. When someone is born with albinism, they are usually declared legally blind. Though I can see, I have nystagmus, which causes my eyes to shift rapidly from side to side in order to find a focal point.
Whenever I meet someone new, I count the minutes before they ask, "What's wrong with your eyes? But health issues can't compare with the struggles I've faced with my self-esteem. As a teenager, while classmates were griping about acne and getting their periods, I was facing a different kind of crisis: Who was I?
Was I a white girl with black parents? Or a black girl living inside a white girl's body? Mississippi, of course, has a tense racial past. Though the KKK is no longer in full force, white supremacist Jim Giles ran for Congress with a vocal if unsuccessful anti-black campaign in and Blacks and whites rarely mix. In a weird way, I felt I was the uncomfortable meeting point between these two groups. In high school, I earned the respect of my white friends for my smarts and quick wit.
They elected me class president. But they also excluded me socially. When I'd ask, "What are you doing this weekend? Other times, they were openly rude, making plans for weekend get-togethers in front of me-but never actually inviting me along. My black friends were similarly respectful at school, while shying away from me at the skating rink or the mall, especially when boys came along.
As for the prom, forget it. That was a nightmare waiting to happen. A black guy might take a white girl to the prom, but taking the black girl who looked white was another story.
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