Tag: Rare Disease Day

Do it Like Damian Lewis: HELP Raise Awareness for EB on Rare Disease Day!

Today is Rare Disease Day, a day to raise awareness about rare diseases and the impact they have on patients’ lives. The primary target of the campaign is the general public; however, it is very important to raise awareness among policy makers, researchers, health professionals and anyone who has an interest in rare diseases. And we would like to take this day to raise awareness as well as funds to find a cure for EB.

Well, most of you know Damian Lewis is a proud patron of Cure EB.

The kids that are born with Recessive Dystropic Epidermolysis Bullosa (RDEB) or EB for short lack the protein that holds their skin together. They have extremely fragile skin that they are sometimes called “butterfly children.” Lots of activities we take for granted as easy routines in our daily lives are a struggle for them. Can you imagine a day where your dressing up takes up to two hours and eating and drinking cause blisters in your mouth and throat? These kids have to deal with this kind of pain every single day. Besides, they are under extra risk to develop skin cancer later in life and their life expectancy is not very long. Continue reading “Do it Like Damian Lewis: HELP Raise Awareness for EB on Rare Disease Day!”

Let’s Raise Awareness for EB on Rare Disease Day!

Damian Lewis answers the Vanity Fair Proust Questionnaire.

Vanity Fair: “Which living person do you most admire?”

Damian Lewis: “Sohana Collins. A little girl I know who’s extremely brave.

Sohana Collins is a young teenager who was born with RDEB, a rare disease, meaning she lacks the protein that holds her skin together. Kids with RDEB have extremely fragile skin that they are sometimes called “butterfly children.” Lots of activities we take for granted as easy routines in our daily lives are a struggle for them. Can you imagine a day where your dressing up takes up to two hours and eating and drinking cause blisters in your mouth and throat? These kids have to deal with this kind of pain every single day. Besides, they are under extra risk to develop skin cancer later in life and their life expectancy is not very long. That is why Sohana’s parents Sharmila and James Collins founded Sohana Research Fund to raise awareness as well as funds for research to ultimately have a cure for this terrible skin condition. Continue reading “Let’s Raise Awareness for EB on Rare Disease Day!”