I'm new to the board...
I have had DLE for a few years but was not diagnosed until a year ago after the birth of my son. I always had the rash off and on and then it got really bad when I was pregnant.
After I had my son I went to the dermatologist and that's when we found out what it was. I have had negative ANA in spite of the joint pain and hairloss. This is a confusing disease to say the least.
I hope to learn a lot from you guys, make some friends and hopefully offer support to others as well. Take care!
I have noticed a lot of the posts on here are for SLE and many of you suffer far greatly than I do. I hope it is ok for me to post and ask questions about DLE. I don't want to butt in for it looks like you guys have way more problems than me. Hope you don't mind if I just hang around a bit. Take care!
I am new here, too--and have wondered if I am "advanced enough" to post, too. Let me tell you what I've found--that the people here are wonderful, supportive, brilliant people who are more than willing to share the tough stuff, the good information, the newest ideas in treatment, etc., with anyone who asks.
You are no less "okay" in posting than anyone else. We all have good days and bad days--and for me, it's nice to know that there are people out there that have found consistent good days. I have SLE; autoimmune vasculitis; and electrophysiological, muscle, and valve problems in my heart. I do get "holes" in my skin... there's no other way to describe them--just all of a sudden (on my legs) I get a 1/2 inch or better "hole"... it's strange. It oozes, bleeds, and doesn't come with an injury. I haven't really said anything to my doc about them... I figure they are par for the course.
I'm glad that you're having good days--and that you have a lovely baby boy to keep you company! Enjoy these days--mine are 18 and 19 now (girls) and it seems like just a few weeks ago they were babies.
Stick around--this is a good bunch
Welcome to the Forum! I'm glad that you found us!
Please just know that anytime you need support, advice, information or just to vent or chat, we're all here for you!
Of course it is okay for you to post and join in! You are VERY welcome here! A lot of the people on this Forum actually have D.L.E. and not S.L.E. and some have both, so there is no reason whatsoever for you not to join in and post! I know that Camyskitties (her screen name) has D.L.E., perhaps you can connect with her?
every body is welcome i am sure everyone will agree, any thing you want to talk about just blow your horn.
ps some one here will konow the answer!
This forum is for anyone whose life has been touched by lupus - whether you have SLE or DLE, or have a friend or family member with lupus, or you just have questions or concerns about the disease - anyone is welcome! Discoid lupus can affect your life just as much as systemic lupus - in some ways it can be harder to cope with because so many of the symptoms affect the physical appearance. Please don't ever feel that you somehow don't "qualify" to post here and share your questions and your experiences - we are all card-carrying members of the lupus club, and EVERYONE is important here.
Hi Georgiamoma :lol:
Welcome to our family! As you can see, you have already been included in our Lupus Family! Ask anything that you want, give as much input as you'd like and share all that you want....we want you to know that you are not alone and the type of Lupus that you have makes no difference to us at all!!
There are even people here who do not have lupus, but have other auto-immune disorders and they are just as much a part of this family as we all are!