Articles for the ‘My Story’ category
Jacob
My name is Wojciech Mistewicz. I have a son – 4 year old – Jacob Mistewicz, who suffers from Ichthyosis, probably it is EHK – bullous ichthyosiform erythroderma. My wife and I are healthy and we checked our generation and cannot see any history of EHK, thus, we assume that there was a spontaneous genetic [...]
Jodie-lee
My name is Jodie-lee, I am 13 years old and I was born as a collodion baby. I don’t know what type, but I have ichthyosis. No one else in my family has the same condition as I have. I have small brown scales around my neck, in my armpits, on my tummy, my waist, [...]
Jessica
Myself and my sister were told from birth that we suffered from eczema, 21 years later, and after finally seeing a different doctor, it was suggested we had something else, EKV. The doctor referred me to a dermatologist and following photos of me, blood tests and consultations, I was diagnosed with EKV. For me it [...]
Yael
Yael was born in April 1986, Mexico. She was born a collodion baby, with multiple skin openings and had to be transferred to ICU in a different hospital before 24 hours, in life threatening condition. She was diagnosed through a skin biopsy with Ichthyosis Lamellar Eritrematosa, the diagnostics was later confirmed in Houston. During the [...]
Nusrit
My name is Nusrit Shaheen and I am 27 years old (2011). I have a skin condition called Harlequin ichthyosis and I live in Coventry with my Brothers and Mum. I had four other siblings who were also born with the same condition but who died as small children. I am possibly the oldest living [...]
Emma
2006 Hi, I’m Emma and I am 13. I’ve got lamellar ichthyosis and so has my sister Stacey. I’ve got two other sisters and a brother, they have nothing wrong with them! Me and Stacey are the only ones in our family that got lamellar ichthyosis! When I was born I had this light green [...]
Ted
Hey I’m Ted. I’m 17 and I’ve just finished my first year of sixth form. I guess ichthyosis differs, I’ve heard about and met people with much more severe cases than myself. Some doctors have called my condition Lamellar and some called it CIE. I’ve got dry skin all over my body and have to [...]
Bill
I was 80 years of age in February 2009. I have had dry skin all my life, when I was a child my elbows, hands, fingers, knees, I lower legs and feet gave me trouble. The Winter was the worst time of the year, when my cracked, skin would bleed. My Mother used to bath [...]