Systemic lupus erythematosus (SLE or lupus for short - easier, right?) is a chronic, autoimmune disease that can damage any part of the body. Basically, the cells that are supposed to protect your body attack and destroy healthy tissues.
I was diagnosed with SLE last summer. It has been almost a year and I'm still getting used to it. There's no cure for SLE and no one knows what causes it.
The things I hate most are having to take medication for the rest of my life, the red rash on my face and that I can't catch sunlight.

The things I hate most are having to take medication for the rest of my life, the red rash on my face and that I can't catch sunlight.
There are two symbols for SLE. One of them is the wolf, because lupus means wolf in Latin and the rash on our faces is similar to the rash that appears in some wolves. The other is the butterfly, because the rash has the shape of a butterfly.
Purple is the colour that symbolises SLE, so...

and help us fight SLE!
PS: If you want to know more about SLE, I really enjoyed this site: http://www.melissasmallwood.com/2013/05/12-things-i-want-you-to-know-about-living-with-lupus/
She has SLE and explains it in a simple way.
Wow, I wasn't expecting this and for some moments I was really taken aback! What a surprise - and a good one in the sense that you openly and HERE mention your condition. This is really a great step forward, Joana, and though you will have to live with it for the rest of your life and are still getting used to it, you'll be able to take the most of life. As a balanced and a great student, I do hope
ReplyDelete"Wherever you fly, you'll be the best of the best.
Wherever you go, you will top all the rest." (Dr Seuss, "The Places you'll go!")
Thank you, Teacher. I decided to make a post about my condition because it isn't something I can hide easily, so I tought I should just explain it so I wouldn't have people asking what I have all the time.
ReplyDeleteI think you are a brave person! I hope you live a happy and healthy life (as much as possible)!
ReplyDeleteWhen you explain me about your disease, I decided searching more about this subject.
ReplyDeleteFinally, I understand why you wouldn't catch sunlight.
But you are an amazing person and I love you.
Joan optimal explanation and strength to fight this disease
ReplyDeleteI realy don´t know what to say, This is a complicated situation, but you should never forget that you are not alone, we are here with you. You must have faith! Don´t give up...
ReplyDeleteWith this post I could have a better understanding of what it means lupus.
ReplyDeleteI think you're strong girl, and I think you're hold up very well. :)
Joana, I have an aunt who also have lupus, it has blood and you?
ReplyDeleteI hope you find healing and never forget that, I'm always here ;)
Be always strong and not pay any attention to what they say!
To answer your question: There are two kinds of lupus one that only affects the skin and one that can affect any part of the body - the one I have. Probably, your aunt has the second one and it affects mostly her blood.
DeleteI did not like to be in your place , I think the worst thing is you can not sunbathe , I think you should be happy and continue to fight your disease , always here for you !
ReplyDeleteJoana I liked the courage you had to talk about about your disease. Unaware of this disease and never imagined that so many were needed care. You do not have less value by that and we are all subject to health problems. Sees all this naturally, we are all here to do whatever it takes. Happy Days.
ReplyDeleteThank you all for your support! It maks me really happy to know that you're with me. :)
ReplyDeleteYou're surely a brave girl who's bearing a devastating disease,so keep fighting even by telling your opinions and showing your feelings on this blog. I hope scientific research will discover one day a treatment for such terrible illnesses, meanwhile you can always count on all people you love to feel better. And remember:never surrender!
ReplyDeleteIt's really sad that you're in this condition now and you can't do anything about it. I hope one day, as soon as possible, somebody will find a cure for this strange disease, but until that day comes, stay strong and NEVER put yourself down!
ReplyDeleteI didn't know this disease and I'm really sorry for you. I'm sure that you are a brave and strong person. Every day it's a fight but you mustn't give up.
ReplyDeleteHi Joana!
ReplyDeleteI think you're a very strong girl because it isn't easy to talk about our problems clearly.
My friend has a similar disease but she isn't so courageous as you!
I think you're engaging the disease in the best way you can do.
I'm sorry for you... but also so proud.
Hi! I just want to tell you that I hope your friend gets better and don't forgget that she needs you support. ;)
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ReplyDeleteHi Joana!
ReplyDeleteI haven't known about this disease before I read your blog. Thank you for sharing your problem with us, I think you are very strong. Now you have to continue to fight against your disease and we will always support you. Don't be sad because you aren't ill but you are only special.
Hi! Thank you all, even though we don´t know each other you guys were really nice! :)
ReplyDeleteHi Joana, I'm Mario. After I had read your story I felt really touched because I know a very few people as strong as you. I'd like to know you better, so here my email account:
ReplyDeleteunknownmario99@gmail.com . The choice of talking wtth me is yours, so you're not forced to reply me. Anyway, if you feel alone or you need any support, contact me. I'll wait for you!
very good post thanks a lot
ReplyDeleteTOSHIBA PLT-805AT