Xeroderma or Vampire Disease
Not so long ago, we wrote about a 29-year-old resident of Brazil, Karin de Souza, who has been suffering from a rare genetic disease since childhood – pigment xeroderma (hypersensitivity to solar radiation). This pathology is diagnosed already in childhood and is a precancerous condition of the skin. Patients with a similar diagnosis are literally contraindicated in sun exposure – their body is not able to withstand the damaging effects of ultraviolet radiation.
To appear on the street, you need closed clothes and several layers of sunscreen. In their homes, the windows are always closed with thick curtains; patients are pleased not with sunny, but with rainy cloudy days. Returning to Karin: the girl has already undergone 130 operations to remove damaged skin. Every year the situation is aggravated, as skin atrophy invariably occurs – such patients need more and more new operations …
Ichthyosis (fish scales)
The skin of patients with this diagnosis resembles fish scales. With ichthyosis, the synthesis of keratin is disrupted in the body – this leads to keratinization of the skin to varying degrees. Those suffering from the disease have to spend several hours daily in the water, getting rid of excess scales, and also use dozens of creams to somehow moisturize the skin.
In this case, the disease not only affects the skin: over time, the nostrils and auricles are deformed, and malignant tumors appear. Patients do their best to avoid exposure to ultraviolet radiation and get rid of neoplasms on the body as soon as possible. These measures somehow help them improve the quality of life, or rather, prolong it. After all, most carriers of the diagnosis die before the age of 15 years.
Epidermolysis bullosa or butterfly syndrome
Many have heard of butterfly children. Their skin is so vulnerable that any minor injury, friction causes suffering. Blisters and erosions instantly appear on the skin. The disease is caused by defects in the genes responsible for the formation of proteins. Pathology manifests itself already at an early age, and there are no radical methods of treatment – small patients are trying to help in the care of already formed blisters.
“Butterflies” children in this case are called because of the resemblance to the sensitive wings of butterflies. According to unofficial statistics, from 2 to 2.5 thousand people with this genetic disease live in Russia. Everyone has also heard about the Russian charitable foundation in support of children suffering from the disease, which is supervised by many stars. Children need special dressings and wound care every day. Accordingly, parents are constantly in need of material assistance.
Argyrosis (or why people turn blue)
It is unlikely that you have friends with a similar disease. But you may have heard about the American Paul Carason, nicknamed Papa Smurf for his resemblance to the famous cartoon character. The fact is that the skin of this man was blue. All because of the deposition of silver particles in the body. As a result, human skin takes on irreversible pigmentation. The disease, by the way, is not genetic. It develops in the case of uncontrolled use of silver-based products, as well as in people whose work is related to the production of this metal. Speaking of Karason, he became the owner of the pathology through his own fault. The man tried to cure dermatitis by using colloidal silver for a long time. And literally turned blue. In addition to argyria, the American began to have kidney and heart problems. He died at 62 from a stroke.
Vitiligo – a disease that has become fashionable
Many people learned about this pathology (due to a violation of pigmentation, parts of the body become white) thanks to the 25-year-old model Winnie Harlow (after her victory in the popular project “America’s Next Top Model”). The girl’s body is covered with huge light spots, which, in contrast to dark skin, looks exotic. This allows Harlow to earn in the modeling business. Non-media people with a similar diagnosis have a hard time: they often attract sidelong glances. Although the disease is not contagious. In about a third of cases, the disease is transmitted genetically. In dark-skinned people, white spots are much more noticeable than in fair-skinned people.
According to the blogger, who maintains her channel in the Yandex Zen “Bore Corner”, life with this diagnosis is better than some.
“Of course, complaining about vitiligo when there are much more serious diseases is a sin. We, people with vitiligo, live a normal life, do not drink expensive pills, do not need complex procedures. Vitiligo has no symptoms other than severe sunburn (but this can be easily avoided with sunscreen).”
However, the disease progresses with age and requires more and more careful monitoring.
Photo: Pexels.com, Pixabay.com, Instagram
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