First off, let me say if you have found this post by searching for ILVEN and are looking for answers I am sorry. I still have none myself.
I guess I should start from the beginning... Around the age of 6 mos. my youngest daughter Grace developed a small linear rash on the inside of her right leg calf. It was only about an inch long and didn't look like anything too serious. I did notice it was growing a little and the fact that it was in a straight line had me curious. At our next doctors appointment I pointed it out and she thought it may be eczema. So, we got a prescription for some cream and went on our way.
Over the next couple of months the rash spread rapidly. It was still linear, but now it went from the middle of her foot all the way up to her belly button. It's not a horrendous rash. Really, it is pretty thin and sections will fade in and out at any given time. At the most it is red and bumpy. It does leave her skin discolored with permanent loss of pigmentation when it fades. This makes it look like a long white scar. I can't count how many people have looked at her leg with pity and asked why she had surgery.
It doesn't bother me that people ask me. I just dread the day when someone asks her. Right now I think she is pretty fond of it. At our first appointment with a dermatologist she jumped up in the chair and when he sat down beside her she pulled up her dress and pointed to her leg proudly. I can only hope she can keep that positive attitude.
That was quite an overwhelming appointment. He asked if we were in a rush and if it would be okay to bring several other people from the office in to look at her leg. I was told that it was extremely rare and they didn't get to see this very often. I immediately got excited that we would finally get answers. I got one: ILVEN.
It doesn't hurt her and for that I am grateful. Our dermatologist told us it could become extremely itchy and painful. That is when they opt for surgical removal, which rarely works and only gives temporary relief. It almost always comes back. So basically we don't know a cause as there isn't enough research which means we don't know what the future holds either.
8 comments:
My daughter has developed a similar rash-looking thing on her right leg...it goes from her bottom to her ankle. It doesn't seem to affect her in any way thank goodness. We have an appointment with a pediatric dermatologist in April. I guess un til then...we wait. I have also been very disappointed with the info available about ILVEN. It's kind of making me crazy.
As I am always on the internet looking for ILVEN, I came across this site. If you look at Nikki Schuettes weblog using the search term ILVEN as well, you will find there are a few of us with children with ILVEN and hopefully between all of us and our various specialist doctors we will eventually find something. You may may find it interesting. Regards Ksren
I am 53 years old and have ILVEN. I was told it was it was exzema when I was child, and it wasn't until recently when I went to the dermatologist for another reason, I was told it was ILVEN. I have had it since I was an infant on my right leg. I have one line down the inside of my leg, and one line down the back of my leg. Once in a while it flares ups, and sometimes hurts a little. I use a coritzone cream for some relief. My dermatologist said it is caused by a childhood autoimmune disease, and I wonder since I was diagnosed in my 20's with Lupus, if that caused it. No one knows. Most people ask if I had surgery or if it hurts. You get used to the questions, I just look at it's part of who I am.
I just came across your blog from googling ILVEN. Ive had it since I was 2 months old and I am 25 now. Its prety much on every part of my body on my right side. But I had alot of luck with some topical treamtents like Efudex. I prety much only have it left on my hand and my face. I havent used the Efudex on my hand and it doesnt seem to work on my face. But if anyone has any questions you can email me at payne_susanna@yahoo.com. My mom probably knows more about it then I do....
I'm 29 and my ILVEN started when I was a couple of months old. It wasn't diagnosed correctly until I was 5 years old. I have it on the back of my calf like your daughter. I also have it other places, most notably my arm. It never really itches on my leg. Keeping it moist (like with aquaphor) really helps. I've tried surgery, but it's always come back for me. I just started a blog about living with ILVEN. Feel free to check it out. There isn't much info yet, but I'm hoping to create a better resource for ILVEN for when people are looking for info online. http://livingwithilven.wordpress.com
My son's girlfriend was born with this. Sadly she said it has been there all of her life but she never knew what it was. I took her to my dermatologist when she turned 18 to see if we could find out if there is anything that could be done to help her. The Doctor told us it is ILVEN and there is no known cure. Of course she was saddened by this news because her areas crack and cause pain and then again sometimes she says it itches. My son and I are taking her to Tulane University Hospital where they plan to present her case. Not really sure if I will be able to find this site again but I will try so I can post what their finding are. They say over 100 dermatologist will be attending. Thats gotta be a good thing.
I work in dermatology and saw my first patient with ILVEN today. Amazing little girl with amazing attitude. Such little information available!
i still ahve ilven. it started when i was 15 yrs old and its been 7 years.try doing phototherapy its safer and it will turn d skin black and to get rid away from the blacknees do a plastic surgery.
Post a Comment