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Living with HV

Wednesday, February 29th, 2012

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…)

Hang in there! Take back control! (Part 2)

Monday, February 27th, 2012

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…)

Hang in there! Take back control! (Part 1)

Tuesday, February 21st, 2012

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…)

Too rare to diagnose: Hydroa Vacciniforme

Friday, February 17th, 2012

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.

This year, 2012, sees calendars with February 29th: a rare day that is only seen once in every four years. Thus it is logical that this day is chosen as the worldwide Rare Diseases Day: a day where extra attention is sought for many rare diseases and disorders from which adults and children suffer every day.

Often the causes of rare diseases aren’t known. There’s often no treatment (yet). That’s why the world needs Rare Diseases Day: to show that these patients too are entitled to care and treatment, like any other. (more…)

Top five sun and skin myths (part 2)

Wednesday, February 15th, 2012

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…)

Top five sun and skin myths (part 1)

Thursday, February 2nd, 2012

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…)

Ultraviolet A more cancer-causing than once thought

Tuesday, October 18th, 2011

While the evidence linking sunbeds to the development of skin cancer continues to mount, recent research provides new insight into the underlying mechanisms.

Radiation from both the sun and tanning beds is made up of various wavelengths, including visible light and several types of ultraviolet (UV) radiation. Ultraviolet B (UVB) rays, those which cause sunburn, have long been heralded the culprit which initiates skin cancer. It does this by damaging the genetic information (DNA) within skin cells, forming lesions known as cyclobutane pyrimidine dimers (CPDs) and pyrimidine (6-4) pyrimidone photoproducts (6-4PPs). These lesions create mutations in the DNA which can lead to the development of skin cancer (you can read about this process here). (more…)

Creating order in the chaos – New sunscreen labels

Tuesday, June 28th, 2011

The US Food & Drug Administration began drafting guidelines for the labeling of sunscreens in 1978. Published in 1999, these guidelines have been under review and revision ever since to try to incorporate protection from ultraviolet A (UVA, 400-320nm) radiation as well as ultraviolet B (UVB, 320-280nm) radiation, exposure to both of which are known to increase the risk of skin cancer.

For many, the multitude of claims and variation in labeling currently in use is confusing and makes comparing brands difficult. Therefore, it was with much relief that on June 14 the FDA announced modified regulations regarding the labeling of sunscreens. (more…)

Ultraviolet radiation and its effects on the skin

Wednesday, June 22nd, 2011

Ultraviolet (UV) radiation forms part of the electromagnetic spectrum between visible light and X-rays; it is invisible to the human eye. UV light can be separated into three bands, UVA (400-320nm), UVB (320-290nm) and UVC (290-100nm). Of the UV radiation that reaches the Earth’s surface from the sun, approximately 6% is UVB and 94% UVA.

Skin maintains a curious balance with UV radiation. When UV impacts upon skin, the various wavelengths of light penetrate to different levels and thus have a number of effects.

(more…)

Melanocyte stem cells

Friday, June 17th, 2011

Human skin consists of a number of different cells. The majority of the top layer of the skin is made up of keratinocytes which are produced constantly and migrate to the surface of the skin where they ‘slough off’ as dead skin.

Melanocytes, the cells which produce pigment in the skin, lie below the keratinocytes at the base of the epidermis (see the figure, click to enlarge). Melanocytes also exist at the root of the hair follicle, in the matrix of the inner root sheath or shaft, and are responsible for giving hair its colour. The dermis, the layer of the skin beneath the epidermis, consists mostly of collagen, elastic tissue and reticulum fibres, along with some specialised nerves and glands. The bases of hair follicles are also embedded in this middle layer of skin.

(more…)

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