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Part Four - The impact of Erythropoietic Protoporphyria (EPP) on life

07 Nov 2011
Mikey's quality of life, like all patients with Erythropoietic Protoporphyria (EPP), is severely affected. Severe pain forces him into living a nocturnal life or enduring outdoor activities in great discomfort or pain. Isolation and unrelenting pain from sun exposure greatly impacts the quality of life of EPP patients. With no effective treatment currently available to them, sun avoidance is their only option. Forced to remain indoors, EPP patients eventually succumb to a nocturnal existence, the only way of life for many porphyria patients. Throughout his life Mikey has been unable to experience the outdoor activities that many take for granted without the protection of clothing that completely blocks the sun such as a boiler suit, balaclava and gloves. Socialising with friends is difficult and "the pain just isn't worth it"…

Quick! I need Sunburn Relief! Remedies and treatment for sunburn.

21 May 2011
There are many remedies available to help provide relief from the symptoms of sunburn. Treatment of sunburn can include: applying a damp towel to sunburnt areas, cool baths, medication, topical ointments and keeping hydrated. If you have any of the following symptoms you may have acute sunburn: *Severe burns *Deep reddening *Extensive blistering *Strong pain *Dizziness or light headedness *Headaches *Nausea or vomiting *Chills or fever In cases of acute sunburn, seek immediate medical treatment. Sunburn is the visible, physical response of the skin to damage by overexposure to UV radiation; the severity of your sunburn will depend on the intensity and duration UV radiation exposure and often damaged skin cells are beyond repair. It’s important to protect your skin from sunlight and UV in order to prevent sunburn and…

Understanding Vitiligo - Causes & Theories April 2011

19 Apr 2011
Vitiligo is a common pigmentary disorder in which the pigment producing cells of the skin (melanocytes) are absent or do not function. As a result, lighter patches of skin appear on various parts of the body due to the lack of melanin (pigment). The exact cause of vitiligo is still not well understood and many theories exist. In this video we explore established and recent theories that explain the loss of epidermal melanocytes. We have set up a dedicated vitiligo webpage with information and resources Visit our blog for guest vitiligo bloggers including Lee Thomas and recent vitiligo news and stories View more vitiligo videos on our webcast page Visit out vitiligo article for further information on causes, symptoms, vitiligo types and treatments.

Part Three - Burning in shadows

11 Apr 2011
This is the third webcast in a series featuring Mikey, an Australian man with Erythropoietic Protoporphyria (EPP). You can view the earlier webcasts, Part one - Absolute intolerance to light and Part two - "People don't believe what they can't see" There is no escape from light when outside for those with Erythropoietic Protoporphyria (EPP). Even in the shadows Mikey has been in agony from reflected light alone. EPP patients spend their lives "shadow jumping", making their way from one shadow to the next in order to limit their exposure to the sun as much as possible. But even out of the direct sunlight EPP patients are always in danger of severe reactions. Light reflects off the ground and other surfaces exposing the skin of EPP patients to light. A…

Increasing Ultraviolet Levels

16 Feb 2011
Have you ever wondered why you have been sunburnt on a cloudy day? The total dose of UV radiation reaching the earth’s surface and hence, the potential damage to human skin and tissues, varies, depending on many factors. The sun’s elevation in the sky depends on the time of the day and year. The shorter the distance that photons (making up the total of UV radiation) need to travel though the earth's atmosphere, the greater the intensity of UV radiation. The altitude of a location also effects UV radiation levels as the higher a location is above sea level, the shorter the distance UV radiation travels. The thinning of the ozone layer located above Antarctica has had a considerable impact on the ability of the atmosphere to absorb UVB, a…

Part Two - "People don't believe what they can't see"

16 Jan 2011
This is the second webcast in a series featuring Mikey, an Australian man with Erythropoietic Protoporphyria (EPP) . View part one of Mikey's EPP video series here The intolerable pain experienced by exposure to light in Erythropoietic Protoporphyria (EPP) patients is mostly invisible and EPP is poorly understood as a result. Try to imagine "having your skin burning off" without there being any sign of pain or damage visible on your skin. This is the invisibility of EPP. Misdiagnosis is common and those with EPP can go years in anguish before their physicians identify light as the cause of their pain. Mikey attempts to convey the pain he experiences after exposing his skin to sunlight. After being burnt, any light exposure is like "driving a nail through your hand", that…

Vitiligo and Stem Cells: Narrowband UVB Phototherapy

11 Jan 2011
Narrowband ultraviolet B (NB-UVB) phototherapy is currently seen as the phototherapy of choice for nonsegmental vitiligo patients. Vitiligo is an acquired depigmentation disorder that is characterised by a chronic and progressive loss of functioning skin and/or hair follicle melanocytes. Melanocytes are found in the epidermal layer of our skin and produce melanin, the pigment that gives colour to our skin and hair. The loss of epidermal melanocytes in vitiligo leads to a loss of melanin pigment which leaves the affected area white. The most common subtype of vitiligo, nonsegmental vitiligo, accounts for 85 to 90 percent of cases. It is believed to be caused by the immune system attacking and destroying melanocytes causing a loss of pigment and leading to the loss of colour. NB-UVB uses specific wavelengths to activate…

Part one - "Absolute intolerance to light"

06 Sep 2010
View part two of Mikey's EPP video series here This is the first webcast in a series featuring Mikey, an Australian man with Erythropoietic Protoporphyria (EPP). When his skin is exposed to light it causes unbearable burning pain. Mikey describes the intense pain of EPP as "feeling like your skin is burning off". EPP is a genetic disease that causes severe phototoxicity (toxic reactions to light). When skin is exposed to light, especially blue light, it results in excruciating pain, swelling and blistering that may lead to scarring. The condition is referred to as "absolute intolerance to light", a fitting name as patients are forced to seek shadows and avoid light. Mikey's determination to enjoy a camping trip with school friends when he was 11 years old resulted in an…

Vitiligo: a breakthrough therapy

24 Aug 2010
The introduction of SCENESSE® in vitiligo treatment. Vitiligo is an acquired depigmentation disorder that is characterised by a chronic and progressive loss of functioning skin and/or hair follicle melanocytes. Melanocytes are found in the epidermal layer of our skin and produce melanin, the pigment that gives colour to our skin and hair. The loss of epidermal melanocytes in vitiligo leads to a loss of melanin pigment which leaves the affected area white. Vitiligo has been described as one of the most psychologically devastating diseases in dermatology. The condition is a chronic relapsing disorder and new depigmented areas of skin can form without warning, having a profound effect on a patient’s quality of life. Discrimination, embarrassment and low self esteem are just a few examples of what a patient must endure…

"Ein Leben im Schatten"

23 Aug 2010
"Ein Leben im Schatten" Wir realisieren nicht die Bedeutung von Licht in unserem Leben, wir halten Licht für selbstverständlich. Anhaltender brennender Schmerz, Isolation und das Unverständnis von Gleichgestellten hat eine langfristige Auswirkung auf Patienten diagnostiziert mit erythropoetischer Protoporphyrie (EPP). Für Lyndal, 24, hat die Krankheit zu schwerer Depressionen geführt
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