. . . All right, I wanted a character with white skin, white hair, and purple eyes. I needed a definite contrast between her and Mischa, the other lead female; this is all sorts of symbolic.
However, I realised that, since Lori's research into a cure for Madison's Syndrome (her version of Albinism) plays a big part in Vita Per Nex, I would need to know more about Albinism. Here I'm going to separate fact from fiction, in an effort to not be an ignorant moron and insult Albinos everywhere. I'm assuming that you've all read the posts pertaining to Madison's Syndrome, so you know the basic outline.
I'd like to thank Bianca Knowlton, an amazing young woman from England, for her site on Albinism (and especially your message boards). You're beautiful.
From her site, with my comments on the tweaking for Madison's in bold and small:
"While most people with albinism have very light skin and hair, not all do. Oculocutaneous (pronounced Ock-you-low-kew-Tain-ee-us) albinism (OCA2) involves the eyes, hair, and skin. Ocular albinism involves primarily the eyes, while skin and hair may appear similar or slightly lighter than that of other family members.
Over the years researchers have used various systems for classifying oculocutaneous albinism. In general, these systems contrasted types of albinism having almost no pigmentation with types having slight pigmentation. In less pigmented (OCA1) types of albinism, hair and skin are cream-coloured, and vision is often in the range of 20/200 or worse.
Lori would classify as OCA1, with the modification that Madison's produces a purple pigmentation in inverse amounts to the level of Madison's --- hence her dark purple eyes.
In types (OCA2) with slight pigmentation, hair appears more yellow or red-tinged, and vision often corrects to 20/60. Early descriptions of albinism called these main categories of albinism "complete" and "incomplete" albinism. Later researchers used a test that involved plucking a hair root, and seeing if it would make pigment in a test tube. This test separated "ty-neg" (no pigment) from "ty-pos" (some pigment). Further research showed that this test was inconsistent, and added little information to the clinical exam.
Ahmed, Lori's father, would classify as OCA2. His eyes are a less noticable shade of purple, often assumed to be a light blue or grey, and rather than the ghost-white skin of his daughter, his is more naturally pale. Tanya had to point out to her parents that her boyfriend had Madison's, if you recall.
Researchers have identified several other genes that cause forms of albinism. In one form of albinism, the Hermansky-Pudlak syndrome, there can be problems with bleeding, and with lung and bowel disease as well. Hermansky-Pudlak syndrome is a far less common form of albinism, but should be suspected if a child with albinism shows unusual bruising or bleeding.
This ties in with Lori's sensitive skin. She's susceptible to sunburns and lighting changes due to her lack of pigmentation, and this form of Albinism sneaking in gives her the delicate skin that her mother accidentally bruised. The fact that this is also not common with Madison's Syndrome means that Mischa really did her homework.
For nearly all types of albinism both parents must carry an albinism gene to have a child with albinism. Because the body has two sets of genes, a person may have normal pigmentation but carry the albinism gene. If a person has one gene for normal pigmentation and one gene for albinism, he or she will have enough genetic information to make normal pigment. The albinism gene is "recessive" it does not result in albinism unless a person has two copies of the gene for albinism and no copy of the gene that makes normal pigment.
Each parent of a child with oculocutaneous albinism must carry the gene. Both the father and the mother must carry the gene for albinism. For couples who have not had a child with albinism, there is no simple test to determine whether a person carries a gene for albinism. Researchers have analysed DNA of people with albinism and found the changes that cause albinism, but these changes are not always in exactly the same place, even for a given type of albinism. Therefore the tests for the gene may be inconclusive.
Yes, there's no record of Madison's in Tanya's family, but she does carry the gene.
People with albinism are sensitive to glare, but they do not prefer to be in the dark, and need light to see just like anyone else. Sunglasses or tinted contact lenses help outdoors. Indoors, it is important to place lights for reading or close work over a shoulder rather than in front.
The first time we meet Lori, she's sitting in a dark room, giving herself a headache. It's mentioned that, since the lights stopped adjusting their brightness, it was just a tension headache. The glasses that she wears cover her entire eyes, and modulate the amount of light she receives --- which is why, when Mischa opened the door suddenly, her glasses couldn't compensate in time; the program wasn't expecting the door to open, since Lori wasn't near it.
If they use appropriate skin protection, such as sunscreen 'Total Block' or at least lotions rated 30 or higher and opaque clothing, people with albinism can enjoy outdoor activities even in the height of summer, within reason of course.
Lori's clothing can be most likened to the concealing clothing and traditional headscarf that Muslim women wear. Due to the terra forming that Earth is going through in order to make it more stable for the Venusians, the weather conditions are harsher, even in the protective bubbles most cities are enclosed in. UV and radiation leak in in trace amounts, leading to a lot of problems. Not all people with Albinism or Madison's cover to the extent that she does; part of that is also that while she's very comfortable in places where people know who she is, amongst strangers she's quite self-conscious. This is due to the way Madison's came about, and the extremely negative social stigma it has --- it can be likened to the way Albinos in Africa are treated, except without the killing bits. Once Lori gets to Venus, she'll be able to wear less concealing clothing.
Mischa's attitude toward Madison's is best summed up, I think, by the way she included a fast-acting anaesthetic in the work crew sent along with Maybelle Tanaka. It's not an issue, it just is.
People with albinism are at risk of isolation, because the condition is often misunderstood. Social stigmatisation can occur, especially within communities of colour, where the race or paternity of a person with albinism may be questioned. . . . Contacting others with albinism or who have albinism in their families is most helpful.
We've already seen the reactions people have to Madison's Syndrome, and also that Lori attends a support group. We'll get to meet the group later. I would also like to note that despite Lori's shyness and insecurities about Madison's, she's quite the strong-willed young woman. Mischa's quite the intimidating young woman, however, and her sudden intrusion into Lori's life, and subsequent yanking of Lori into her life, has shaken the young doctor up a bit.
I think that's it, for now. All this information is from http://www.knowlton.clara.net/family/Albinism/what_is_albinism.htm, and there are also some lovely pictures of Bianca and other Albinos there, too.
