My name is Wojciech Mistewicz. I have a son – 4 year old – Jacob Mistewicz, who suffers from Ichthyosis, probably it is EHK – bullous ichthyosiform erythroderma. My wife and I are healthy and we checked our generation and cannot see any history of EHK, thus, we assume that there was a spontaneous genetic mutation. We live in Warsaw (Poland).
Jacob was born with ichthyosis and at the beginning we did not know that something was wrong. The next day, Jacob has been placed in an incubator and was diagnosed with ichthyosis. Immediately after his birth his skin was reddish and scaly. He was born in fetal green waters 2 weeks before term. For 2 weeks Jacob remained in hospital and was treated by applying lanolin and paraffin creams.
Initially Jacob’s ears were deformed but now they look normal. His eyelids did not close completely but now they are fine.
At birth the worst were Jacob’s wrists and ankles, they were cracked open wounds that would bleed. Jacob’s hair is growing normally but he has scales all over his head. The palms of his hands and soles of his feet are not so affected and are better than other parts of his skin. His face is the least affected only having scales on his forehead from time to time.
As ointments we use – Oilatum, Emolium, Balneum, Clear Vasilin, Dexeryl, Alpha Dermal, Eucerin and more. Some of them have urea, but to be frank in did not notice anyone of them is better than the other (for. example – accelerate shedding)
The next step was to carry out blood testing. Jacob’s blood was sent to Japan for testing and we are in contact with Mother and Child Institute in Warsaw – specifically the genetic division which performs tests on blood samples and compares them with the results of the Japanese.
Currently, Jacob goes to nursery. We thought there would be a problem with the children and their parents when it comes to Jacob’s appearance. However, it turned out it is not a problem. The problem has become a bad intensive odour. Several parents did not accept that. The nursery staff were very supportive of Jacob and now the matter is settled and the atmosphere is ok.
We recognise that many challenges are still ahead of us – primary education, high school and the reactions of many people encountered
Wojtek & Jacob