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About us

What means ichthyosis?

It's a skin disease in which the upper layer of the skin (epidermis) is very quickly renewing. And this makes the skin to look not so attractive despite the frequent hygiene procedures (bathing several times a day, exfoliation, cream application). All this is due to the breakdown of the gene which is responsible for normal skin functioning.

Skin is the largest organ of a human being whose basic function is protection. Restoring this protection and hourly monitoring the skin is very important task for the baby's parent with ichthyosis. And as well the lifelong task of the adult living with this disease.

Ichthyosis can be complicated by syndromes, including under-researched Netherton syndrome. Now we have about 20% of such children.

The history of the Association

That is why in February 2017 the «Parents of children with ichthyosis» community was formed in the «Vkontakte» social network.

Initially it was a closed group and consisted of only 7 moms. After a year and a half, more than 160 families from all over Russia, Russian-speakers from the CIS countries and Europe, joined it. Until now, this group is our sweet-home where we have useful and productive communication: we share information about treatments, problems and all the essential topics. Families from neighboring cities have the possibility to meet each other in a group and afterwards becoming a friends.

As a result, over a year and a half, very valuable information was collected all together (which even doctors doesn't have) regarding the treatment of the skin with ichthyosis. During this time the list of necessary skin treatment creams and medicines was created. Then we have got reviews about medical centers abroad, where a qualified help could be provided. Also acute problems characteristic of this disease were identified.

As well adults who suffer from ichthyosis has joined us. Now there are 13 of them. They help us more psychologically than informatively, because in their childhood ichthyosis was considered an incurable disease leading to early death.

Who we are

The people affected by this disease.

Recently we have realized that it is necessary for us to expand to a something bigger like «Association of people living with ichthyosis». First of all, this is needed in order to cooperate with the healthcare system: clinics, geneticists and pay more attention of the doctors to ichthyosis. The Association is open for the communication and cooperation.

Now, in 2018, the organization is undergoing legal registration procedures, a website, logo and slogan is created. Also the goals and tasks are expanded.

Our tasks and targets

  • search and connection of people with ichthyosis (adults and children);
  • cooperation with Medicine on all levels and to improve the treatment of ichthyosis disease throughout the country, amendment of medical legislation (including simplification of the procedure for disability registration of ichthyosis and inclusion of necessary daily expensive creams and ointments, as well as special bathing and skin cleansing creams in the list of free medicines);
  • search for sponsorship in order to help with Ichthyosis skin treatment: ointments, creams, detergents, medicines to relieve exacerbation;
  • cooperation with psychologists to support families (solving problems of accepting the disease, interacting with the society, improving the psychological climate in the house, overcoming conflicts between parents);
  • enlightenment of the society and enhancement of the culture of communication with people who are different from usual people;
  • communication with foreign Ichthyosis Associations worldwide for international exchange of treatment experience.