Wednesday, 22 August 2012

Unknown Illnesses: Epidermolysis Bullosa (EB)

As a sufferer of a relatively unknown illness, I thought I'd do some posts on unknown illnesses just to raise some awareness of them.

I found out about Epidermolysis Bullosa from an article on the Daily Mail. Click here to read it. I felt to sorry for the poor baby girl. I hope she has the strength to live with such an awful illness. Bless her heart.

This is an inherited condition where the proteins between the layers of skin haven't formed and so trauma to the skin results in blisters. The chronic damage to the skin can increase the chances of skin cancer.

There is no cure for this illness.


I used to think that my illness was the worst. And in some ways, I think it's the worst. But this is also up there on the list of the worst illnesses you wish you never have.

There is a charity in the UK called DEBRA (click here to go to their website). You can go on their website to learn more about it.

If you ever get the chance to inform people of an orphan illness like Epidermolysis Bullosa, please do. The only way we can raise awareness of illnesses is if we learn about them and spread the word. We need to find cures for illnesses and they'll never come if nobody knows about the illness. And I'm being honest when I say this, but even my doctors are ignorant of my disease and that does not fill me with hope. The medical community saddens me sometimes.

Hope you're all okay.

Kamille.

8 comments:

  1. I love the idea of posts like this. Even for more well-known diseases like diabetes, people are incredibly misinformed. The few things they do know is about type-2, since that's all the media hypes about. Heaven forbid if I try to inform people about type-1, which I have; they just assume I'm wrong despite the fact that I'm the one living with the disease. (Grr.)

    And aww, epidermolysis bullosa sounds so tragic! My heart goes out to that baby and her family. I can't imagine dealing with something so life-altering so young. She's going to have a rough road ahead of her. :(

    I agree, there needs to be more awareness for diseases like this. Even if there will never be a cure for them in our lifetime, there can hopefully be one for the next generation if the word is spread!

    ReplyDelete
    Replies
    1. I think people just assume fat people get diabetes and don't realise that it can happen to anyone. And yes, that's sad right?

      I hate it when people think they know more than you when you're the one who has experienced it!

      I know. It's hard since this is a rare illness but there are people out there who need the help.

      Lets pray there is more awareness soon!

      Delete
    2. Definitely sad!

      I really do hope there is more awareness soon, for various diseases. The world shouldn't continue to turn a blind eye to them all....

      Delete
  2. I'm so sorry to hear about your illness. but you're right, the only way to find treatment and cures for the many orphan illnesses out there is to raise awareness. Great post and as we say in France, "Courage, ma belle."

    ReplyDelete
    Replies
    1. I don't have EB but another illness. Thanks!

      Delete
  3. These deseases are horrible. Hope the scientists can find a cure.

    ReplyDelete
  4. I'm sorry to hear you're not in good health. :( It's terrific that you're spreading the word about similarly under-noticed illnesses. This is a wake-up call for me, at least.

    ReplyDelete
  5. Hi Kamille,

    I would love to have a chat with you about a new TV documentary series we're making for Discovery.

    Please get in touch on love@betty.co.uk if you're interested.

    Best wishes,
    Riddhi

    ReplyDelete

Thank you for visiting my blog. Feel free to leave a message! I'd love to hear from you :D