Om EB på DFDS intranät

För en tid sedan tog vi beslutet att köpa elcykel till Natalie. Denna är bara en av många utgifter vi har på grund av hennes sjukdom och vi bestämde oss för att söka pengar ur några fonder. Det blev i första hand gällande delbetalning av cykeln en ansökan till EB Föreningens "EB-fonden". Senare bestämde jag mig för att söka ur min arbetsplats DFDS delägare "Lauritzen Fonden" gällande flertalet utgifter. Glädjande nog fick vi positiva besked från båda! Jag ville ta chansen att sprida info om EB samt att uppmuntra andra inom DFDS att utnyttja chansen att söka medel ur Lauritzen Fonden så jag bestämde mig för att skriva ihop en text till vårt intranät. Cykeln vi köpte kommer förresten från EvoBike ifall du vill titta närmare på den online.

Nedan är på Engelska, ville gärna dela detta med dig också!

In 2009 my daughter Natalie was born with a severe skin condition called Epidermolysis Bullosa, EB for short. Lacking the protein Collagen VII, which is supposed to work like a glue between the layers in our skin, Natalie easily hurts herself. A little bump that you and I would hardly notice can cause a blister or even make the skin peel off on her leaving an open wound, and these wounds are difficult to heal. To complicate things even more she is just as sensitive on the inside as on the outside making it difficult to eat, swallow and thrive. EB is often referred to as “Butterfly skin” and the younger ones are described as “Butterfly Children”.

When you are born with one of the more severe forms of EB, common daily things such as brushing your teeth and walking to school can be a big challenge. Everything you do can cause a blister to form, even the seams on your clothes, because of the friction when you move. Finding shoes that don’t hurt your feet is close to impossible, and walking can certainly be a challenge. The scar tissue after a wound has healed can be compared to those after a third-degree burn and the skin ends up being inflexible, which is why you over time can end up being handicapped in various ways.

EB is a rare genetic lifelong condition and it comes in three main types, Natalie was born with Recessive Dystrophic EB.

Even though Natalie is facing many problems on a daily basis she is always smiling and staying positive in every situation, she inspires us greatly! For every challenge faced we work hard to find the best solution. For example, it’s common with her type of EB to lose the flexibility in your fingers due to heavy scarring. We bought her a piano and signed her up for piano lessons. Apart from the music bringing both her and us much joy it keeps her fingers activated and hopefully this will prevent them from getting too stiff.

Biking has always been one of her favourite summer activities and we used to have a tandem trailer (a one wheeled bicycle you attach behind your own bicycle as a trailer) but when she outgrew it we decided it was time to find another solution. We found a three wheeled one with electricity support – the perfect solution! Smaller risk of tipping over hurting herself and help to get up the hills since her condition prevents her from exerting herself too much.

The bike together with special shoes, special protective clothing and other frequent expenses that we have to support Natalie led me to apply for funding from Lauritzen Fonden. I’m happy to share with you that Lauritzen Fonden decided to grant us this and in the last few weeks we have been on many bike rides... Thank you DFDS and Lauritzen Fonden for providing this opportunity to DFDS employees, you truly made a difference in Natalie's life! I would also like to take the chance and encourage anyone who has a relation to Epidermolysis Bullosa to reach out to me. It’s a rare condition but within this big company I’m sure there are others than me who have some type of connection to EB and I would be so happy to hear from you.

Above infographic from Debra Internationals website, please follow this link for more information!