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  • member-stories
  1. Get Help
  2. Member Stories

Member stories

These are a collection of personal stories of living with ichthyosis by our members. These stories feature many types of ichthyosis from a wide age range of people, including parents and individuals with ichthyosis. You may have seen some photos of people with ichthyosis, but here you can meet some of the families behind the photos. Read what it is really like to have a child with ichthyosis, or to live with the condition from the people who know.

Would you like to share your experience of living with ichthyosis? Please complete our form to tell us about your story (500 words approx) of living with ichthyosis. It may be featured in our e-bulletin, newsletter and on the website.

We know that by reading other people’s experiences of living with ichthyosis it can be reassuring and of comfort to others.

Meet our Members

 

Max

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. Read more

Posted to: Member stories

These are a collection of personal stories of living with ichthyosis by our members. These stories feature many types of ichthyosis from a wide age range of people, including parents and individuals with ichthyosis. You may have seen some photos of people with ichthyosis, but here you can meet some of the families behind the photos. Read what it is really like to have a child with ichthyosis, or to live with the condition from the people who know.

Would you like to share your experience of living with ichthyosis? Please complete our form to tell us about your story (500 words approx) of living with ichthyosis. It may be featured in our e-bulletin, newsletter and on the website.

We know that by reading other people’s experiences of living with ichthyosis it can be reassuring and of comfort to others.

Meet our Members

 

Published: 8th April, 2020

Updated: 14th May, 2020

Comments: 1

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... Read more

Posted to: Member stories

These are a collection of personal stories of living with ichthyosis by our members. These stories feature many types of ichthyosis from a wide age range of people, including parents and individuals with ichthyosis. You may have seen some photos of people with ichthyosis, but here you can meet some of the families behind the photos. Read what it is really like to have a child with ichthyosis, or to live with the condition from the people who know.

Would you like to share your experience of living with ichthyosis? Please complete our form to tell us about your story (500 words approx) of living with ichthyosis. It may be featured in our e-bulletin, newsletter and on the website.

We know that by reading other people’s experiences of living with ichthyosis it can be reassuring and of comfort to others.

Meet our Members

 

Published: 8th April, 2020

Updated: 14th May, 2020

Ted

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. Read more

Posted to: Member stories

These are a collection of personal stories of living with ichthyosis by our members. These stories feature many types of ichthyosis from a wide age range of people, including parents and individuals with ichthyosis. You may have seen some photos of people with ichthyosis, but here you can meet some of the families behind the photos. Read what it is really like to have a child with ichthyosis, or to live with the condition from the people who know.

Would you like to share your experience of living with ichthyosis? Please complete our form to tell us about your story (500 words approx) of living with ichthyosis. It may be featured in our e-bulletin, newsletter and on the website.

We know that by reading other people’s experiences of living with ichthyosis it can be reassuring and of comfort to others.

Meet our Members

 

Published: 8th April, 2020

Updated: 15th May, 2020

Kevin

Kevin

I have just been diagnosed as having Ichythyosis X-Linked in the last few weeks. I am 46 years old man and have suffered since birth on my legs, arms and trunk. Read more

Posted to: Member stories

These are a collection of personal stories of living with ichthyosis by our members. These stories feature many types of ichthyosis from a wide age range of people, including parents and individuals with ichthyosis. You may have seen some photos of people with ichthyosis, but here you can meet some of the families behind the photos. Read what it is really like to have a child with ichthyosis, or to live with the condition from the people who know.

Would you like to share your experience of living with ichthyosis? Please complete our form to tell us about your story (500 words approx) of living with ichthyosis. It may be featured in our e-bulletin, newsletter and on the website.

We know that by reading other people’s experiences of living with ichthyosis it can be reassuring and of comfort to others.

Meet our Members

 

Published: 8th April, 2020

Updated: 15th May, 2020

Comments: 2

Chantell and Andrew

Chantell and Andrew

My name is Chantell.  I live in a small community in Fort Nelson B.C,  not a very big town for sure but the people are friendly and we call it our home. Read more

Posted to: Member stories

These are a collection of personal stories of living with ichthyosis by our members. These stories feature many types of ichthyosis from a wide age range of people, including parents and individuals with ichthyosis. You may have seen some photos of people with ichthyosis, but here you can meet some of the families behind the photos. Read what it is really like to have a child with ichthyosis, or to live with the condition from the people who know.

Would you like to share your experience of living with ichthyosis? Please complete our form to tell us about your story (500 words approx) of living with ichthyosis. It may be featured in our e-bulletin, newsletter and on the website.

We know that by reading other people’s experiences of living with ichthyosis it can be reassuring and of comfort to others.

Meet our Members

 

Published: 8th April, 2020

Updated: 15th May, 2020

Comments: 1

Helen

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... Read more

Posted to: Member stories

These are a collection of personal stories of living with ichthyosis by our members. These stories feature many types of ichthyosis from a wide age range of people, including parents and individuals with ichthyosis. You may have seen some photos of people with ichthyosis, but here you can meet some of the families behind the photos. Read what it is really like to have a child with ichthyosis, or to live with the condition from the people who know.

Would you like to share your experience of living with ichthyosis? Please complete our form to tell us about your story (500 words approx) of living with ichthyosis. It may be featured in our e-bulletin, newsletter and on the website.

We know that by reading other people’s experiences of living with ichthyosis it can be reassuring and of comfort to others.

Meet our Members

 

Published: 8th April, 2020

Updated: 15th May, 2020

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. Read more

Posted to: Member stories

These are a collection of personal stories of living with ichthyosis by our members. These stories feature many types of ichthyosis from a wide age range of people, including parents and individuals with ichthyosis. You may have seen some photos of people with ichthyosis, but here you can meet some of the families behind the photos. Read what it is really like to have a child with ichthyosis, or to live with the condition from the people who know.

Would you like to share your experience of living with ichthyosis? Please complete our form to tell us about your story (500 words approx) of living with ichthyosis. It may be featured in our e-bulletin, newsletter and on the website.

We know that by reading other people’s experiences of living with ichthyosis it can be reassuring and of comfort to others.

Meet our Members

 

Published: 8th April, 2020

Updated: 15th May, 2020

Comments: 2

Jodie

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. Read more

Posted to: Member stories

These are a collection of personal stories of living with ichthyosis by our members. These stories feature many types of ichthyosis from a wide age range of people, including parents and individuals with ichthyosis. You may have seen some photos of people with ichthyosis, but here you can meet some of the families behind the photos. Read what it is really like to have a child with ichthyosis, or to live with the condition from the people who know.

Would you like to share your experience of living with ichthyosis? Please complete our form to tell us about your story (500 words approx) of living with ichthyosis. It may be featured in our e-bulletin, newsletter and on the website.

We know that by reading other people’s experiences of living with ichthyosis it can be reassuring and of comfort to others.

Meet our Members

 

Published: 8th April, 2020

Updated: 15th May, 2020

Jessica

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. Read more

Posted to: Member stories

These are a collection of personal stories of living with ichthyosis by our members. These stories feature many types of ichthyosis from a wide age range of people, including parents and individuals with ichthyosis. You may have seen some photos of people with ichthyosis, but here you can meet some of the families behind the photos. Read what it is really like to have a child with ichthyosis, or to live with the condition from the people who know.

Would you like to share your experience of living with ichthyosis? Please complete our form to tell us about your story (500 words approx) of living with ichthyosis. It may be featured in our e-bulletin, newsletter and on the website.

We know that by reading other people’s experiences of living with ichthyosis it can be reassuring and of comfort to others.

Meet our Members

 

Published: 8th April, 2020

Updated: 15th May, 2020

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. Read more

Posted to: Member stories

These are a collection of personal stories of living with ichthyosis by our members. These stories feature many types of ichthyosis from a wide age range of people, including parents and individuals with ichthyosis. You may have seen some photos of people with ichthyosis, but here you can meet some of the families behind the photos. Read what it is really like to have a child with ichthyosis, or to live with the condition from the people who know.

Would you like to share your experience of living with ichthyosis? Please complete our form to tell us about your story (500 words approx) of living with ichthyosis. It may be featured in our e-bulletin, newsletter and on the website.

We know that by reading other people’s experiences of living with ichthyosis it can be reassuring and of comfort to others.

Meet our Members

 

Published: 8th April, 2020

Updated: 15th May, 2020

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. Read more

Posted to: Member stories

These are a collection of personal stories of living with ichthyosis by our members. These stories feature many types of ichthyosis from a wide age range of people, including parents and individuals with ichthyosis. You may have seen some photos of people with ichthyosis, but here you can meet some of the families behind the photos. Read what it is really like to have a child with ichthyosis, or to live with the condition from the people who know.

Would you like to share your experience of living with ichthyosis? Please complete our form to tell us about your story (500 words approx) of living with ichthyosis. It may be featured in our e-bulletin, newsletter and on the website.

We know that by reading other people’s experiences of living with ichthyosis it can be reassuring and of comfort to others.

Meet our Members

 

Published: 8th April, 2020

Updated: 15th May, 2020

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... Read more

Posted to: Member stories

These are a collection of personal stories of living with ichthyosis by our members. These stories feature many types of ichthyosis from a wide age range of people, including parents and individuals with ichthyosis. You may have seen some photos of people with ichthyosis, but here you can meet some of the families behind the photos. Read what it is really like to have a child with ichthyosis, or to live with the condition from the people who know.

Would you like to share your experience of living with ichthyosis? Please complete our form to tell us about your story (500 words approx) of living with ichthyosis. It may be featured in our e-bulletin, newsletter and on the website.

We know that by reading other people’s experiences of living with ichthyosis it can be reassuring and of comfort to others.

Meet our Members

 

Published: 8th April, 2020

Updated: 15th May, 2020

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ISG's 25th Anniversary Year Appeal

ISG's 25th Anniversary Year Appeal

2022 is the ISG's 25th Anniversary Year and to celebrate this we are aiming to raise a minimum of £25,000. We need your help! Here you can make a donation, start a regular donation or set up a fundraising page.. Read more

Donate Fundraise

Published: 14th August, 2021

Updated: 10th April, 2022

Author: Mandy Aldwin-Easton

25th Anniversary Year Merchandise

25th Anniversary Year Merchandise

Free delivery on orders to help you raise awareness and funds for ichthyosis with our very special anniversary merchandise and collection box Read more

Published: 14th April, 2022

Updated: 28th April, 2022

Author: Mandy Aldwin-Easton

An investigation into memory, cognitive function and mood in ichthyosis

An investigation into memory, cognitive function and mood in ichthyosis

The effects of genetic changes associated with ichthyosis on memory, cognition and mood in being investigated, and we need you to to participate in the latest research. Read more

Published: 22nd June, 2022

Author: Mandy Aldwin-Easton

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