Egor is now no longer in an orphanage but is being fostered by Margarita and Valera and has two brothers called Tomos, 10, and Stefan, eight - who also has ichthyosis
but not as severe - as well as a sister, Dominika, 14 - siblings who were adopted by the couple.
See: Hearing Impairments, Ichthyosis
, Leukodystrophy, Tay-Sachs Disease
Daniel and Julie have set up a website with a blog about Jack, forums for Ichthyosis
sufferers and their families and details about the condition.
Four of Nelly's eight brothers and sisters were also born with Harlequin Ichthyosis
and died as young children.
For the parents of Rhiannon Morgan, this became a reality when she was diagnosed with ichthyosis
, a rare scaling skin condition.
Lucy had been born with Harlequin Ichthyosis
, an extremely rare genetic skin condition that meant she was covered in thick plates of skin that caused deep cracks across her body and distorted her face and limbs.
Our Barrier Repair Technology (US Patent 5,643,899) is based on the discovery that the lack of a competent skin barrier function plays an important role in various skin diseases, including atopic dermatitis (eczema), allergic contact dermatitis and ichthyosis
, and that the restoration of the skin's barrier by topically applying epidermal lipids is able to significantly improve the dry skin and itching that characterizes these conditions.
ONE of the challenges which Nelly faces is the amount of ignorance which still surrounds Harlequin Ichthyosis
It determines whether a patient who presents with the common skin disorders atopic dermatitis or ichthyosis
vugaris has a mutation that prevents the skin from working as an effective barrier to allergens and infectious agents.
Nine-year-old Rhiannon Morgan suffers from ichthyosis
, which means her skin grows too quickly, is sensitive and blisters easily.
The four most advanced product candidates, which are in or entering Phase III clinical trials, are under development for the treatment of Candida-associated diaper dermatitis, seborrheic dermatitis, fungal infections, including vaginal candidiasis and onychomycosis, and congenital ichthyosis
Nusrit, or Nelly to her friends, is one of just 14 people in the UK with Harlequin Ichthyosis
They are indicated for hyperkeratotic conditions such as dry rough skin, dermatitis, psoriasis, xerosis, ichthyosis
, eczema, keratosis pilaris, keratosis palmaris, keratoderma, corns and calluses and damaged and devitalized nails.
The product, bioequivalent to Bristol-Myers Squibb's Lac-Hydrin(R) lotion, is a prescription product used for the treatment of dry, itchy, scaly skin (xerosis and ichthyosis
Hanifin noted that the important new study found a connection between atopic dermatitis and the disease ichthyosis
vulgaris, a genetic disease characterized by dry, scaly skin.