In a letter published this week in the British Journal of Medicine three dermatologists have highlighted the potential risks posed by the Royal Mint’s new 5 and 10 pence coins to those with certain contact allergies and called on the government to review the new tender. (more…)
In the final post from the Roosenboom family, and to help recognise Rare Diseases Day, Simone has penned her own piece on her experiences with Hydroa Vacciniforme. We are grateful to the Roosenboom family for being able to share their story.
Hi, all.
My name is Simone and I’m almost fifteen years old. I got ill when I was nearly six; exactly nine years prior to the day I wrote this. You can read all about that in the previous blogs written by my father.
The first years, my illness troubled me, but it got worse when I turned ten years old. The year 2007 turned out to be a horrific year for me. I got a bit older and more aware of myself and the way my surroundings reacted to my appearance. I looked quite scarred and felt that I was different. Quite a lot of people acted in a way that strengthened that feeling: they looked at me with horror. My parents and I got quite upset with that, even to the point that my mother told these people in anger that I was contagious so they would quickly get away from us. I thought it was funny but in the end it didn’t change anything. (more…)
We recently invited Richard Roosenboom to share his experiences as a parent of a child with a rare disease. In the coming weeks we will publish part of the Roosenboom’s story in a four post series. In part one of this post Richard described the onset of Simone’s disorder and the road to the diagnosis Hydroa Vacciniforme (HV) some months later.
Our local hospital learned about Simone’s diagnosis with HV and invited us to discuss her condition. They felt that the diagnosis needed confirmation by tests. Yet, as HV itself cannot be confirmed by tests, that meant that Simone would have to undergo a series of examinations to exclude other diseases and disorders. They felt that the diagnosis of HV could be accepted only if all others had been excluded. We learned about some tests being quite painful and harmful to Simone’s skin and took control again: we refused. We decided to accept her having HV and not having her undergo such an ordeal, knowing that even if HV was confirmed, it would change nothing. (more…)
We recently invited Richard Roosenboom to share his experiences as a parent of a child with a rare disease. In the coming weeks we will publish part of the Roosenboom’s story in a four post series. You can read the first post here: Too rare to diagnose: Hydroa Vacciniforme.
In 2003 our daughter Simone (then almost six years old) was diagnosed with Hydroa Vacciniforme (HV) by a leading Dutch dermatologist with over 35 years of experience. He listened carefully to our story, retreated for a moment to think and consult some books, and then came back and pointed out the page in a book where HV was described. He had never seen it in his life! After over three months Simone’s illness finally had a name and a history, and we felt like having a future again. (more…)
Myth 4: I need lots of sun exposure to create vitamin D
Vitamin D is a contentious topic in modern medicine and something we’ve blogged about regularly. It’s known to play a role in strengthening bones (with low levels known to contribute to rickets and osteomalacia) and has been linked to the prevention of various diseases, including certain cancers. We know that exposure to sunlight is an efficient way for the body to produce vitamin D, however the UV radiation in sunlight also causes sunburn, skin cancer, premature skin aging and other damage. (more…)
Those who have taken an interest in Clinuvel will have learned with joy that, on Monday February 6th, the company announced its first official filing for SCENESSE® (afamelanotide) with the European Medicines Agency. It has taken our teams around six years to arrive at this point. Benchmarked against peer companies, it is a relatively swift development path for a first-in-class drug; we first publicly announced our erythropoietic protoporphyria (EPP) program in September 2006. It is an opportune moment to reflect briefly on how we reached this milestone and then discuss the steps that must be taken from here. (more…)
There are a number of misconceptions about the interaction between sunlight and skin. In this two part post we look at what we think are the top five most common sun and skin myths.
Myth 1: I can’t get sunburnt on a cloudy day (more…)
It’s estimated that more than 9,000 Americans will die from melanoma this year and 76,000 new cases of the disease will be diagnosed. Melanoma, an aggressive skin cancer which can spread (metastasize) quickly to other parts of the body, is also the second most common form of cancer in young Americans (those aged 15-29).
Overexposure of skin to ultraviolet (UV) radiation significantly increases an individual’s risk of melanoma, particularly at a young age; just one severe sunburn in childhood can double the lifetime risk of melanoma. Sun protective measures such as clothing and sunscreen are seen as key to reducing melanoma risk. (more…)
Young adults are the age group most likely to seek a tan, with research showing that people under the age of 29 – particularly women – are tanning most frequently, both in the sun and under solariums. Aside from the well-recognised risks of skin cancer, there is another consequence of this increased exposure to ultraviolet (UV) radiation of which many teens are not aware – photoaging. In short, all this UV exposure over time makes skin look older. (more…)
According to the U.S. Preventative Services Task Force (USPSTF), the best way to deter teens and young adults from overexposure to the sun is to demonstrate the effects ultraviolet (UV) radiation can have on their appearance.
The USPSTF, an independent panel of experts assigned to provide recommendations on an array of health prevention issues, looked at evidence indicating behavioural counselling could help to prevent skin cancer. The newly released recommendations, an update of the 2003 statement, suggest that teens’ behaviour can indeed be changed through counselling; particularly that which highlights the physical changes UV radiation causes to skin, such as premature aging and wrinkling. (more…)
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