Ichthyoses are not curable. Their treatment is therefore based on the individual signs of the disease and is therefore only symptomatic. Since the skin is overall too dry, it needs water and fat and must be “descaled”. Baths with common salt and bath oil are considered very useful. Sponges for brushing the skin are essential.
External treatment of ichthyosis
Ointments and creams for external ichthyosis treatment consist of an oil-water mixture in various concentrations, such as petrolatum, glycerin, Eucerin, lanolin alcohols, etc. Various active ingredients that promote desquamation can be incorporated into these bases by the pharmacist: Urea, salicylic acid, common salt, lactic acid and vitamin A acid. The ointment base polyethylene glycol also has a desquamating effect. According to dermatologists, urea has proved most effective. Salicylic acid should only be used on small areas of skin and only for short periods of time, especially in smaller children, because large areas of highly concentrated continuous treatment can lead to poisoning. The strongest dandruff remover is vitamin A acid. However, it quickly causes skin irritation and burning, so you have to be careful when using it. Some active ingredients can also be combined to enhance the effect. Common and effective concentrations of these horn detaching substances are:
- Salicylic acid up to 5%
- Vitamin A acid 0.025%
- Urea up to 12%
- Common salt up to 5%
- Lactic acid up to 5%
- Polyethylene glycol 300-400
Further measures for therapy
Steam baths at moderate temperatures with high humidity soften the cornifications. In addition to oil or salt baths, sun or warm and humid climate have a positive effect on the condition of the skin. Comprehensive treatment always includes occupational counseling, which takes into account the sensitive skin.
Internal treatment of ichthyosis
Internal treatment is possible with tablets containing the active ingredient acitretin. These tablets belong to the group of retinoids, which are substances related to vitamin A – drugs that resemble vitamin A (retinol) in structure and effect. Retinoids influence the conversion of the genetic information of a cell. In the case of cornification disorders, they have a regulating effect on the uncontrolled proliferation of skin cells and promote the slow maturation of the newly formed cells. They also have a direct corneal dissolving effect, which occurs after only a few days. Retinoids influence cells of the immune system in the skin and have an anti-inflammatory effect. Acitretin dissolves cornifications of the skin and prevents their reformation for a certain time. Caution: Acitretin is not suitable for women of childbearing age, as it causes severe damage to the unborn child during pregnancy. Pregnancy must therefore be safely excluded before, during, and until two years after the end of therapy.
Beware of heat accumulation
Very problematic is the inability to sweat. For those affected, this is often worse than the scaling of the skin. For children, in the summer months, this means they cannot play. But adults are also significantly limited in their performance despite precautionary measures. Even moderate physical exertion at temperatures around 20°C can lead to heat accumulation. At higher temperatures, massive facial flushing and overheating of the body with simultaneous dehydration (dehydration) occur. Only internal (drinks, ice cream) and especially external cooling and hydration can prevent circulatory collapse and, in children, febrile convulsion.
Psychosocial consequences of ichthyosis.
The visibility of their skin condition causes significant problems for those affected. Rejection, irritating and discriminatory remarks, and social exclusion begin in infancy and continue throughout life. Again and again new therapies, new doctors, not seldom hopelessness and a tiring everlasting skin care are a burden which nobody can understand. Psychotherapeutic support can be helpful.
Options for support with caregiving
It is already possible for young children to apply for a severely disabled person’s card at the pension office.The degree of disability (GdB) for congenital ichthyosis is usually between 50 and 70 out of 100, but also up to 100 depending on the severity. The treatment of a child with ichthyosis is not only associated with a great deal of mental stress, time and effort, but also with considerable additional costs (such as water, detergent, clothing, non-reimbursable care preparations). Therefore, the application for nursing allowance according to SGB XI is justified.
