Articles for the ‘What’s New’ category

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Genetic testing and diagnosis

We are conducting a very short survey (only 5 questions) about your views on Genetic testing and diagnosis. We would very much appreciate your responses. The answers you provide could help BADGEM (British Association of Dermatologists Dermatology and Genetic Medicine) a UK-wide network linking clinical Dermatologists with an interest in genetic skin diseases, establish genetic […]


YP Face IT Online advert Final

Online Support For Young People With A Visible Difference

YP Face IT is an easily accessible seven week web-based support for young people aged between 12 and 17 years old living with a visible difference.  Would you like to test it out and provide feedback? Do you have a condition, birthmark, scarring or illness that affects your appearance (the way you look)? Does it […]


Martin

Martin

Hello, My name is Martin Turner, I was born in Wolverhampton in 1993 which makes me 21 years old. I am a Musician/Singer-Songwriter and studied Music Technology at Staffordshire University, I Sing and Play various instruments like Guitar, Piano, Bass etc. I play in two bands ‘Fairview Road’ and ‘Crisis State’. I was born with […]


Update on Research on Autosomal Recessive Congenital Ichthyosis/Lamellar Ichthyosis

Professor Edel O’Toole, Centre for Cutaneous Research, Barts and the London School of Medicine and Dentistry, London (ISG MAB) Transglutaminase 1 is an enzyme produced in the upper layers of the skin which is important for formation of the skin barrier.  The skin barrier protects the body from water loss and infection.  Mutations in transglutaminase […]


Ichthyosis: My Story

Ichthyosis: My Story – young people talk

Young people with ichthyosis can feel very alone. It is good to know that someone else shares your experience and understands. The ISG’s new booklet is a collection of true stories and photos of real people, both children and adults, with ichthyosis so you can read about how they cope with it. “During 30 years […]


ISG and Len celebrating

The day we were stunned with the news that we had won a National Lottery Award 2013

We are delighted and extremely proud to announce that the Ichthyosis Support Group (ISG) have won the National Lottery Award for the Best Project in the Health category. The BBC spent Thursday 15th August with the ISG and some of our families filming us for what we were told was a short piece, highlighting the […]


Raise your hand

“Raise Your Hand” for Rare Disease

Do something really special today by supporting a campaign to raise awareness of rare diseases. It takes less than two minutes to sign up at www.raiseyourhand.co.uk and you can be one of 2000 people who will have their name featured on a sculpture showing support for people with rare diseases for next February’s Rare Disease […]


Justtextgiving

Support us with a text!

Help support our cause with a donation by text. It is very easy! Please support ISG by donating an affordable amount by simply texting your donation to 70070 and use unique code ICHT14 followed by a space then £10 to make a £10 donation. For more information before you text please click on the image. […]


Products

Aqueous Cream and SLS

Emollients (moisturisers) soothe, hydrate and protect the skin. Long-term emollient therapy is the main treatment for dry skin conditions (xerosis, ichthyosis and eczema). Emollients should be unperfumed and prescribed in adequate quantities and in a formulation (cream, ointment, oil, soap substitute) acceptable to the user. Aqueous cream (AC) has been used for 60 years as […]


Test Tubes of Colored Liquid

Research – Participants Needed

Researchers are looking for mothers/daughters of individuals with X-linked ichthyosis who have suffered mental health problems after giving birth. Work undertaken at Cardiff University has recently suggested that women who have reduced levels of the molecule steroid sulphatase may be at increased risk of developing postnatal mental health problems. In order to see whether this […]


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Contact a Family Launches Counting the Costs 2012

Contact a Family have just launched their latest research Counting the Costs 2012 Following a survey they conducted earlier this year.  Findings show that families are going without essentials, such as food, heating and clothing, and getting into debt before the full impact of benefit cuts is felt. 58 per cent of families fear their financial […]


yface it

YP Face It – Online support for young people with a visible difference

Are you a young person or parent of a young person with a condition that affects appearance such as ichthyosis? Is your child worried about their appearance, does it interfere with their life or stop them from enjoying themselves, or are they upset by teasing or other people’s reactions to the way they look? Would […]


Genes

Ichthyosis vulgaris research update April 2012

Ichthyosis vulgaris research update ~ Dermatology & Genetic Medicine, Dundee, April 2012 Filaggrin gene discovery The research group in Dundee, Scotland, led by Professor Irwin McLean first discovered the changes in the filaggrin gene that cause ichthyosis vulgaris in 2006. Since this time we have been working hard to learn more about the filaggrin gene […]


Gene

Eradication of K1/K10 in the epidermis – a model for Bullous Congenital Ichthyosiform Erythroderma (BIE/EHK) therapy

Update 2012 We have finished the project and published it recently in the highly renowned international scientific journal Journal of Cell Science (L. Wallace, L. Roberts-Thompson, J. Reichelt. 2012. Deletion of K1/K10 does not impair epidermal stratification but affects desmosomal structure and nuclear integrity. Journal of Cell Science. Epub ahead of print). (Wallace et al., […]


CAR logo

Centre for Appearance Research (CAR) launches FACE IT, a new online support programme for adults who have a condition that affects appearance.

In November 2011, CAR welcomed health professionals from around the UK to the launch of ‘Face IT’, their online support programme for adults with appearance-related distress as a result of a condition, injury or medical treatment that affects their appearance; for example, those with a skin condition such as ichthyosis, with burns or surgical scarring […]


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Make sure your view of the Consultation on the UK’s Plan for Rare Diseases is heard!

Earlier diagnosis of a rare condition and better co-ordinated care will help improve the quality of life for people with rare diseases and their families, according to the first ever UK plan on rare diseases, published for consultation by the Department of Health. To ensure that the views of patients, patient organisations and medical professionals […]


Genetic Alliance Logo

How do you access new therapies and healthcare services – participate in the survey

How do you access new therapies and healthcare services? As a patient, caregiver, or patient advocate of rare diseases, your views are very important to helping understand access to quality healthcare issues and challenges. In order to gather your views on these issues, we would like to invite you to participate in a survey. The […]


Pound

Benefit changes – get up to date information now!

Are you on benefits? Are you worried about how recent changes in the welfare system may affect you? Call Contact a Family’s freephone helpline on 0808 808 3555 to order your copy of their Guide to future benefits now. Written by their experts, the guide gives you up to date details of changes to the […]


doctor

Emotional and Psychological effects of living with a skin condition.

Living with a skin condition is difficult, but how many people acknowledge the emotional and psychological impact it has on the person affected and their loved ones?  Scott Thomas, a medical student from Kirksville College of Osteopathic Medicine - A.T. Still University, does and wants to find out how many patients consider their skin condition affects them psychologically and […]


Charity choice

Charity Choice

Are you planning a fundraising event, or would you like to simply make a donation? With CharityChoice  simply give a donation or if you are participating in an event you can set up your own individual fundraising page tailored specifically for your event, they will even help you to promote it! Please visit the Ichthyosis […]


BT mydonate

BT’s mydonate

Are you planning a fundraising event? With BT’s mydonate you can set up your own individual fundraising page tailored specifically for your event, they will even help you to promote it! Please visit the Ichthyosis Support Group’s home page to make a donation, create a fundraising event or simply find out more.


Virgin money

Virgin Money Giving

Are you planning a fundraising event? With Virgin Money Giving you can set up your own individual fundraising page tailored specifically for your event, they will even help you to promote it!  Please visit the Ichthyosis Support Group’s home page to make a donation, create a fundraising event or simply find out more.  


Journalism

ISG members in the media

A couple of ISG members have been telling their story recently in the press, both in magazines and on tv. Please visit our MEDIA section to read or see their stories that have been featured in the media. For these and more stories about some of our members please visit our media area by clicking […]


Incorporation

Incorporation of the ISG

Those who attended the Annual General Meeting held during the Funday at Thorpe Park in September 2010 will recall we announced our plans for the next development of the ISG by becoming an incorporated charity. This would result in registration not only with the Charity Commissioners but also on the Companies Register. We had been […]


Where's the point?

Where’s the point? – A trip around the UK!

The initial idea for the trip came when Sue (the wife), Aidan (the son) and I visited Lands End whilst on holiday. The commercialism of it seemed a shame, and though interested by the end to end exhibit, I thought not for me. Then I thought why not but go to the real southern point […]


Newscaster in Television Studio

ITV’s This Morning interview with ISG member

ISG member Nusrit Shaheen appeared on ITV’s This Monring programme on Thursday 25th August along with ISG’s Medical Advisory Board Chairman Dr David Paige. You can see the interview by clicking on the title above and then following the link. Living with Harlequin ichthyosis (If you experience problems playing the clip, maybe a message saying […]


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Quality Standards for Dermatology

A document named Quality Standards for Dermatology has been published that has been worked on by a team of representatives from all the stakeholders in dermatology. These standards form the foundations of a good dermatology service for everyone with a skin condition. What will now be worked on are specific standards about different treatments and […]


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‘Top Tips’ – living with ichthyosis

Living with ichthyosis can be difficult for not only the person with the condition, but also family members or those closest to you.   Some of our members, and their families, have come up with some great tips to make life easier and help with the day to day living with ichthyosis. If you have any words of […]


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Satisfaction in Life for Children – Quality of Life Measurement

Paediatric doctors at University College London have developed a quality of life measure  for children aged 4 to 10 years old with a chronic illness such as ichthyosis.  Many conditions, such as ichthyosis, have no specific information or statistics available regarding quality of life. It has been shown through much research, that given the same […]


Andy Corbett

Trustee – Andy Corbett

My first proper introduction to the ISG was at the 2007 conference in Bloomsbury, London. My wife, Sue, said that her friend Maggie Aldwin was looking for volunteers to help over that weekend. It was to be a special weekend as the ISG was celebrating its 10th anniversary, so of course I said yes. I […]


Sarah

Trustee – Sarah Griffiths-Little

I was born a Collodian baby and was later diagnosed with Lamellar ichthyosis. I became a member of the Ichthyosis Support Group (ISG) in 2011 and did not really give it much thought after that, I received my monthly news letter and Christmas cards but did not think I had much to give the group […]