Other Possible Complications

There are many other possible complications:(my daughter does have some of the following)

pointed teeth

cleft lip

club foot

bald spots

half a spine

mental retardation or slowness

lusterless and coarse hair

colorless areas of the skin

seizures

blindness

and many many others are possible

Stage 4

Stage 4 also lasts for the rest of your life. This is areas of the skin that do not hold any color at all. When you get a tan, they will stay white. These are blotchy areas, seen on the legs a lot, that can occur anywhere. No pain is associated with these last 2 stages!!! This is a very good thing, that the child has to go through no pain at all to very slight pain for not long. Considering how long the stages last, the baby having to deal with just a little pain is a very comforting thing. Now that all the skin stuff is over, I will let you know about some of the other complications that are a possibility.

Stage 3

Stage 3 lasts from around 9 months to, well could be the rest of your life. This is hyperpigmented swirl like patterns on the torso area of the body. These do not necessarily conver the entire torso, but more on the sides of it. My daughter got the marks around a year old and although, they are still there, they are not as noticable as they were before. They have faded some and are now very hard to see.

Stage 2

Stage 2 starts when the blisters begin to dry up and become scabs and wartlike hard areas of the skin. These are mostly on the extremeties and not as much on the torso of the body. This will last up to about 9 months of age. Still the nerve endings are not completely developed and the child can not feel these areas. Although the older the baby gets, the more likely they are able to feel the scabs. My daughter began picking at the scabs around 7-8 months old and we had to keep gloves on her to keep her from picking them. Although if they are picked off, they will not spead (it is not contagious) but they will bleed and hurt and cause more scarring than normal. My daughter had one really bad area on her left leg that stayed scabbed up until she was almost a year old. She was around 10 months old when you could see her left leg clearing up.

Stage 1

Stage 1 lasts from birth to around 3 or 6 months of age. This stage consists of the body being covered in blisters and peeling skin. Believe me! it's not a great thing to meet your child looking like this and not knowing anything about it! It is not a pleasant sight for the eyes, but the actual child does not feel any pain or even know that there is anything on the body. The child does not have complete nerve endings, so they can not feel anything and this is a very good thing!

A little bit of history

There are 4 steps to this condition and the amount of time they last differ from person to person and step to step.

This is a genetic defect in the X chromosome passed on by the mother to the child.

Only girls will survive; boys do not have a strong X to counteract the bad X and therefore, will be stillborn or miscarried.

Many complications can accompany the prominant ones with this disorder...I will let you know about them a little later.....