I am glad to have found this website. I have also visited the FIRST website and found helpful info. I am having trouble determining if I have CIE or Vulgaris and wondered if any of you with CIE have similar symptoms that I have. I always thought I had IV, but some of the others on the IV forum thought the heat intolerance suggested a different form.
I have all the IV symptoms except for nasal allergies, asthma or eczema in >50%. During annual 2-week winter vacations to Florida when I was a child, my skin always improved.
In addition to IV symptoms, I also have the CIE symptoms of the thickening of palms and soles (but not flexures). I also have the heat intolerance and my hands on both sides (top and bottom) look the pictures of the hands under CIE.
When I exercise, there is no sweat but the area above my upper lip gets moist and so does my chest. I could not see any visible wetness just slightly tacky to the touch in those areas. My face gets very red. It is only red during exercise, heat, or when I am embarrassed.
The only time I have any visible sweat or wetness on my face is when I am outside in hot, humid weather in the sun even if I am doing nothing other than sitting and getting no exercise. Sometimes it looks like I have a “white moustache” with my very red face. If I am very nervous or upset, the area above my upper lip may sometimes sweat but that is rare.
I was not a collodion baby. My mom said I was red like a lobster, but she did not say anything about a membrane. I am a fraternal twin and was born 6 weeks premature, and had to stay in an incubator for a month before I came home, but I assume she would have remembered if I had a membrane. I asked her if my skin was dry at birth and she said she thought it was not at birth but sometime later. I know for sure it was by kindergarten because no other kids would touch my hands. They said they felt weird and looked old. The skin on my hands and feet has trouble absorbing and holding the moisture. The skin on the rest of my body will feel better after lotions or creams, but on my hands and feet it doesn't last more than a minute or so.
Scale is on most of body except face, neck and inside of arms and wrists and front of ankle and top of feet, but toes and fingers are wrinkled. Face is flaky. I usually leave behind flakes on my cloths which gets better the more consistent I am with AmLactin. Worst on back and legs. Scales and flakes are white, thin but very visible.
I am the only one in my family with this. I have two sisters and two brothers who are not affected. My parents and grandparents were not affected and I don't know of any distant relatives. My two sons have skin that gets a bit dry in the winter and they have some dry bumps on the back of their arms and legs (KP) but that is it. I have not seen any scales or flakiness on them. They both sweat. One sweats very easily and the other sweats and gets only a little red in the face. It doesn't seem to be a problem for them though. My one son's hands are a bit more lined on the palms but they are very fine lines and his hands are not dry and the tops of his hands look normal and don't have the "old look" like mine.
My skin tolerates most products and is not easily irritated except for dryness and when it gets fissures or splits on my knuckles, fingertips or heels in the winter.
One thing I don’t understand about the lack of sweating is if scale prevents sweating, why wouldn’t I sweat in place that don’t have scale such as underarms, neck, etc.? Do you think the sweating is part of ichthyosis but not scale related? I don’t even sweat in the summer when my skin is better.
About the red face, I found this on the web:
"Red skin indicates vasodilation and the pooling of blood near the surface for release of heat. The red flush is just a sign that you're building up heat. When your temperature begins to rise, your body dilates the blood vessels in your skin to reduce your body temperature. This circulates blood to your skin's surface so that heat can radiate off of it. Your face turns bright red because warm, oxygenated blood rushes to it as a way to help prevent you from overheating."
Thanks for your help! Just wondering if others with CIE have what I have. I don’t know if I have a mild case of CIE or a severe case of IV and if they can be combined like this.