Articles for the ‘My Story’ category

Helen

I am now 51 years old….just.  I have had ichthyosis all my life.  It is part of me and I live with it.  It makes me unique.  Sometimes it frightens me, because I and others do not know it is going to “behave”, but usually I cope with it.  This is my story. When I […]


Mai

Mai

My name is Mai, I’m a 20-year-old student with many dreams and ambitions. As other sufferers of ichthyosis, I had been going through both physically and mentally difficulties. However, it’s a must to learn how to face our problems. Then I have gradually accustomed to solve them on my own step by step. Have you […]


Max

Our son was born 2 years ago with harlequin ichthyosis.  We were told he would not live, we were shocked, devastated, free falling with fear, desperation, confusion. We had an exceptionally fantastic NICU team who cared for us. Our hugest luck was a nurse present at Max’s birth who had already cared for 2 collodion […]


Anthony

Anthony

“Have you spent too long in the sun?”…. If I had a pound for every time I got asked that question I would be able to buy a small island in the sun. Having Lamellar ichthyosis can seem like a lot of things, with the usual comparison to sun burn,eczema, psoriasis and even acid burns. […]


Rebecca

Rebecca

On June 19th 2010, myself and my partner Darren (now my husband), organised a buggy walk in memory of our son Feddie. Freddie would have been a year old on June 21st 2010. We felt it important to organise this event to raise money and awareness of ichthyosis. In 2005, me and my partner watched […]


Sarah

Sarah

My name is Sarah I’m 33 yrs old (June 2013) I have Lamellar Ichthyosis (LI) and here’s my story. I do not know what age I realised I had a skin condition all I can remember is I was different because my skin came off and was dry. I had to spend what seemed like […]


Daniel and Emma

Daniel and Emma

October 2012, 6 weeks to go until my due date. My fiancé Steve set off on a business trip to Washington DC. If it had been any closer he wouldn’t have gone, but a whole 6 weeks (and if the baby’s anything like me he’ll be late anyway) it was too big an opportunity to […]


Ann

Ann

After a beautiful pregnancy and 12 hours of labour my daughter was born at 6.50pm as soon as she was born I knew there was something wrong. The doctors did not fetch her to me as I was expecting they just told me that something was not right with her. At 8pm I was told […]


Ellamay

Ellamay

When Ellamay was born she was very red.  I remember my Mum asking the midwife why she was so red but her response was it was to do with the oxygen and she did not appear concerned.  I was concerned as she looked noticeably different. As I had experienced complications with the birth I needed […]


Wendy

Wendy

My name is Wendy and I have lived with Ichthyosis vulgaris all my life.  Within hours of being born my skin dried out and started peeling, my Mother told me that the skin on my hands peeled off as if I were wearing a pair of gloves, shedding my skin like a snake in the perfect shape […]


Mekhi and Laura

Mekhi and Laura

My name is Laura and I have a beautiful little boy called Mekhi who has Lamellar ichthyosis. I no longer say Mekhi ‘suffers’ from ichthyosis because thanks to the support of the Ichthyosis Support Group (ISG), we use creams that really do make the difference and a creaming routine that allows him the complete freedom […]


Jacob

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 […]


Family

Jodie

My name is Jodie, 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

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

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 and Stacey

Emma and Stacey

Written in 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 […]


Ted

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 […]