Over Netherton, Ichthyosis en de stichting

Netherton rug

Ichthyosis, a general introduction and tips for self-cure.

According to the pocket medical dictionary, Ichthyosis is defined as ‘fish skin disease’. It is a congenital (meaning present at birth) skin condition causing dry rectangular scales on the skin. As you can read on the website, there are many types of skin conditions that can be classified as Ichthyosis. People with Ichthyosis suffer from an imbalance in renewal and peeling of the skin: The skin can generate too many new cells and or cells cannot peel easily. This leads to the disruption of the normal process and causes scaly skin. The genetic mutation that causes the disorder can be inherited (passed from parent to child) or occurs spontaneously.

The different types of Ichthyosis will be further explained on this website in the different tabs Some types share similarities but there are many differences in outlook as well.

Because in Ichthyosis the epidermis is thickened, the skin cannot function normally. The skin will loose fluids more rapidly and because of the dry skin cracks can occur.

Diagnosing Ichthyosis can be done in different ways:

  • By looking at appearance: when looking at the skin what can be observed?
  • Family members will be questioned about skin problems: are there other children affected? And what about parents, grandparents, aunts, uncles?
  • What information can be extracted from blood samples: Are certain proteins present or missing?
  • Heredity: What information can be provided from DNA?

There is no cure for Ichthyosis. But symptoms can be treated. Creams and ointments can be used to make the horn layer of the skin thinner. By adding certain acids like Salicylic Acid, Urea or propylene glycol to the cream. These acids are not without side effects. They can cause irritation or get into the bloodstream, because the skin is very permeable. Fatty creams and lotions can be used to prevent the skin from dehydrating. The fat forms a protective layer. But application of the cream needs to take place multiple times a day. For milder forms of Ichthyosis, daily application usually leads to good results. For more severe forms this will be not enough and extra medication is required. When infections occur, anti-bacterial ointments need to be used.

Severe forms of Ichthyosis sometimes require medication:

  • Neogaston is extracted from vitamin A. This medication can strongly improve the condition of the skin, but there are side effects. Advantages and disadvantages need to be balanced. And doctors will be cautious in providing it to children.
  • Neoral: This medicine suppresses the immune system and has certain side effects. Therefore a docter needs to be consulted before use of this medicine.
  • PUVA: This is a combination of pills and UV. The medication becomes active in combination with a certain dosage of sunlight. During the treatment explosion to outside sunlight needs to be limited. Pro’s and Com’s of the treatment need to be considered. Pregnancy is only advisable from two years after use of this medication.

Bathing usually feels nice. It softens the skin and flakes can be removed better. Applying cream is easier when the skin is damp. It is better not to use soap as this extracts fat from the skin.  Oil is better to use. Flakes can be removed with washcloth or something similar. But one needs to be cautious, as the skin is very vulnerable. During infection one can use anti-bacterial soap. These products can also be used during showering. The frequency of showering or bathing depends on your preference.

Having Ichthyosis means using a lot of fatty creams. These products will affect your clothes and bed linen. Flakes can come into your washing machine and have a damaging effect. Adding soda to your laundry is an old fashioned remedy that breaks down the fat. It can also be beneficial to let your washing machine run empty at 90 degrees with a significant amount of soda. Soda, diluted in boiling water can be used into the drainage of your bathroom.

Ichthyosis is a chronic disease that will keep you busy over and over again. It can have an effect in your family, school, relationships and work. It certainly helps to contact other people with Ichthyosis. And this is also one of the objectives this website tries to aim for.

Practical tips:

  • When you have skin problems, itch is inevitable. Allergy tablets can give release. Itch often means your skin is dry…. Time to apply some cream!
  • Oil can be used to remove flakes on your scalp. Massage some oil onto your scalp at night to loosen the flakes. In the morning wash the oil away with shampoo.
  • Flakes in the ear canal can cause problems like blockage or lost of hearing. A medical specialist can clean your ear canal.
  • New creams can be tested on a small piece of skin like your underarm. Try new products for some weeks in order to give them a fair chance to work.
  • Your body odor can be influenced negatively by the use of cream. Bathing with anti bacterial products can help. Also adding a drop of essential oil to the cream can cover the smell.
  • Sometimes eyelids cannot be completely closed due to Ichthyosis. This can cause dry eyes and irritation. An eye specialist can prescribe drops or creams.
  • Many people suffering from Ichthyosis are sensitive to over-heating. Weather circumstances have a greater influence on their well being. The skin makes sweating difficult. So it is important to be precautious when playing, driving a car, sports and warm weather conditions. Overheating can cause palpitation of the heart, clamminess, headache and increased hart rate. Cooling down is the best remedy. And if necessary, consult a doctor.