Miah's Journal

About a week after Miah came home we noticed aline of dry skin in her inner legs and a patch of dry skin on her elbow.

By this time her right leg was covered in patchy scaly like skin, her left leg was spotty with the patches, and her elbow was covered with a trail leading to her fingers. It was spreading to her abdomen. In her inner left thigh she was losing pigment in some areas. We were referred to a local dermatologist.

We got into the specialist today. The doctors looked over Miah very carefully, the assumption was IP (Incontentia Pigmenti), the doctors did a biopsy to find out for sure.

The biopsy results are in! It is not IP, but another disease that is more rare. Miah's final diagnosis is Epidermolytic Hyperkeratosis (EHK).

Miah went to the Dermatologist, we were advised that it was not dry skin but a rare skin disease. the doctor thought it was ErythroKertodermia Variabilis (EKV).

Miah is started on lac Hydrin lotion.

We saw the Special Dermatologist today. We found out that Miah's condition is to be life long. The thick scaly plaques of skin will stretch as she grows, so it is hard to tell how much of her body will be covered until she stops growing (we have a long road ahead of us). We were referred to the Genetics Clinic at Childrens Hospital. We also did the National Registry. We got samples of bath oil to use to help soften the scaly parts and were told to inscrease the use of the Lac Hydrin lotin. I still don't know to much more but I will get more info on this disease soon.