DaneMarkz for the debra charity!

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Today I would like to focus on something very special. The top and the necklace for today’s post are something very important.

Both was made by Hannah Daviau, owner and designer of DaneMarkz (DMZ) and it is her contribution for the EB Charity Event.

The top is available in 6 wonderful colors and patterns with flowers and butterflies and all what you can imagine under the summer theme :). For todays post I chose the “Nanette” top in peachy green. The beautiful combination of colors and the amazing shape of the top are the right choice for the upcoming season. Together with the “Summerlovin'” necklace in green wich as well is a donation to the debra  (Dystrophic Epidermolyosis Bullosa Research of America) charity. AS well she made some shoes that will probably be part of another blog post ;).

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What is EB?

Epidermolysis Bullosa (EB) — The Worst Disease You’ve Never Heard Of.™

Epidermolysis Bullosa, or EB, is a very rare genetic connective tissue disorder that affects 1 child out of every 20,000 births (that means about 200 children a year are born with EB).  EB is actually a group of disorders that share a prominent manifestation of extremely fragile skin that blisters and tears from friction or trauma. Internal organs and bodily systems can also be seriously affected by EB.  The list of secondary complications  can be long and may require multiple interventions from a range of medical specialists.  As of today, there is no cure or treatment.  Daily wound care, pain management and protective bandaging are the only options available.

The manifestations of EB, the symptoms the person suffers from, and the overall long term outcome on quality of life run the gamut from mild to devastatingly severe.  This is dependent on several factors including the type and subtype of EB and the inheritance pattern (autosomal dominant versus recessive).  There are many people who are diagnosed with milder forms of EB, which, while they can be extremely difficult and painful to live with, are not disfiguring or lethal.  In these forms of EB blistering of the skin may be limited to the hands and feet which may not result in any scarring or loss of function.  In more severe forms there is generalized blistering of the skin as well as injury to many internal organs and bodily systems.  These more severe forms of EB result in disfigurement, disability and early death, usually before the age of 30.  In fact, some forms of EB are lethal in the first few months of life.

EB is caused by mutations in the DNA code that make up genes.  Genes are responsible for making and expressing proteins.  EB can result from one genetic mutation in any one of the 18 genes that have been found to cause the disorder.  These mutations, or errors in the genetic code, may not allow the affected gene to produce a specific protein, or it may result in the incorrect formation of that protein.  Either way, the mutation does not enable the affected protein to work correctly thus resulting in extremely fragile skin, and other manifestations of EB like: anemia, cardiomyopathy, syndactyly (fusion of the fingers and toes), renal insufficiency, dysphagia (difficulty swallowing), malnourishment, cancer, constipation, osteoporosis, muscular dystrophy and pyloric atresia.

There are four types of genetically inherited EB: Simplex, Dystrophic, Junctional and Kindler.  These four major types of EB differ phenotypically (what physical manifestations look like) and genotypically (the genetic makeup) as well as by the area of the skin where there is blistering, otherwise known as “the site of ultra-structural disruption or cleavage”.  There is also an autoimmune form of the disorder called, EB Acquisita .

Children with EB are known as Butterfly children because their skin is as fragile as the wings of a butterfly.

There are about 30,000 people with EB in the United States.

EB affects both genders and every racial and ethnic background.

– See more at: http://www.debra.org/whatiseb#sthash.TT4tsTP7.dpuf

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Details

Top: DaneMarkz (DMZ) – “Nanette” /peachy green – NEW (mesh, debra charity)

Necklace: DaneMarkz (DMZ) – “Summerlovin'” /green (mesh, debra charity)

Jeans: GizzA – “Skinny Pants” (mesh)

Hair: Vanity Hair – “The Meadow”

Shoes: M&E – “Sneakers”

Skin: Silken Moon – “Wicca 3”

AO: Vista Animations – “Sweet Chica” (used on pic 2 and 3)

Model & Photographer: Wicca Merlin

“Wicca the Lioness” – A very special creation from Poulet Koenkamp!

(PurpleMoon – “Wicca the Lioness”, Model: Wicca Merlin, Photographer: Poulet Koenkamp)

Today I have a very special creation of PurpleMoon. This outfit is going to be part of the Back to Black event of Keira Seerose. The Back to Black event is an awareness event of mental health. For all participants Keira gave out several key words, the designer had to work with and make creations and designs according to the given word. The word Poulet got was ‘courage’. But before I tell more about the story behind the wonderful “Wicca the Lion” outfit I would like to add a personal story I have with this incredible design of Poulet Koenkamp, owner and designer of PurpleMoon.

I know Poulet quite for some time and she always was very kind and friendly. Even as I was a very new aspiring model she always supported me and let me blog her awesome gowns. She as a huge past and archived a lot with her clothing. PurpleMoon is one of the most wanted stores for Miss Virtual World designs, as well PurpleMoon supports many charity events if they have a good reputation and Poulet takes part in many different little events for limited and special creations. She dedicates a lot of time to help and support several events and people.

A few weeks ago, as I finished another blog post for her we were talking and I asked her what people have to do to get gowns named after them. It was kinda in a funny mood and meant as a little joke even if I for sure dreamed in forever to have one of her creations named after me. But I actually never thought about this could happen, as mostly very well-known people were allowed to give their names for PurpleMoon creations.

Then she suddenly said “Just ask me.” and I started shivering and still did not really got it. The she asked me to tell her a few words about me so that she could get an inspiration. I told her a bunch of attributes and words that came in my mind if I think about me. In the end I looked my words and was afraid as they totally made no sense together. But Poulet said, it was exactly what she needed to work with and I was even more excited.

Time went by and I started to think that I gave Poulet too much weird input about me, as she suddenly ran in my IM again and told me she wanted to tell me something. We actually talked on voice for the first time ever – she really has a wonderful smooth voice that fits her personality totally – she told me that she did a gown named “Wicca the Lioness” as she was working on the item for the Back to Black event.

Here I would like to steal her words that she put on her flickr as it is the short version of what we talked…

Poulet Koenkamp:

“I would like to share a little bit of the story behind this picture. I’ve known Wicca for long time now and I’ve known myself for even longer than that, but not as long as you are thinking.

Around 12 years ago, I had to go through, what it is so far, the hardest moment of my life. It came like a storm and I thought it was never going to leave me. Depression, phobias, fears, panic attacks, you name it. For a while it was almost impossible to even get out of my house, or stay in a room with more than two people, or teaching my students, or … pretty much feeling that I was going nuts. And as somebody said the other day, whatever your brains tell you, you will believe, it’s your brains, you know?

A month or so ago, I get this invitation to be part of the “Back to Black” event organized by CHIC with the main purpose to raise mental health awareness. Later on I was given the word “Courage” and asked to create an item inspired on the concept of “Courage is not the absence of fear; it is the overcoming of it”.

Around the same time, chatting with Wicca we come across the idea of creating an outfit inspired by her and she brainstormed for me a few words that I kept on a notecard.

I struggled for a month. There was no deadline for Wicca’s outfit but there was one for the event. One day, don’t ask me why, I realized two things. One, I was relating a lot with this creation, with the word, with the concept. Courage. It took me a lot of that to get out of the place I was many years ago. If somebody is looking for an advice, what worked for me was therapy, lots of it, and a couple of hours of yoga every day. I found myself, the one that was hidden and afraid. I overcame to my fears; I faced them, battled them and accepted them. They keep coming back sometimes, but I know them already and they are not as strong as they used to be. I keep fighting.

The second thought that came to my head was that the beginning of the outfit I had in front of me was not only about my own courage, there was something else in it. I looked for my notecard and read out loud the words Wicca gave me, they were all there. [16:22] Wicca Merlin: crazy, elegant , tight, extraordinary prims, satin, classy, avantgarde, shiny, adult, non-symmetric

It seems that all these words, thoughts, memories and impressions had been bouncing in my head for while and they all came out in the shape of the “Lioness”. Who has an armor to protect herself, who has the strength of a lion and the fragility of the feathers; who has an open heart easy to break but that she has learned to protect; she decided it is better to keep it open giving as much love as she can than refrain the power of its love.

A little story that might inspire somebody else, It takes a lot of courage to walk through troubling times, but, you learn so much on the road, it absolutely worth it.

Event opens February 11th
More info: www.chic-management.com/?page_id=1236

With this words I even felt more honred that this wonderful creation carries my name now. I cannot compete to Poulet’s picture at all but I at least wanted to show her how much this outfuit means to me and I tried on by myself as well. It has so many details that just come right of my heart and Poulet made the effort to look behind my outside and she catched so many of my inner that is nearly not to belive… but she did it…

Poulet I have no words that would nearly describe how much you touched my heart and how grateful I am… still… thank you lots and you know how much it means to me 🙂 *hugs you tight*

(PurpleMoon – “Wicca the Lioness”, Model & Photographer: Wicca Merlin)

Details

Outfit (incl. hair, shoes & nails): PurpleMoon – “Wicca the Lioness”

Tattoo: Wicked Tattos – “Live for Today”

Skin: Silken Moon – “Rookie” (special custom makeup)

Eyeliner: Silken Moon – “Wicca”

Lashes: Detour – “Widow”

Bow: Archery Ranges – “Dynamic Archery”

Pose: Wicca Merlin