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.
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.
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.