ISG Leaflet Expand Reaching out to those living with ichthyosis Are you affected by dry, scaly, inflamed or thickened skin? Ichthyosis – pronounced ick-thee-o-sis – is a term used to describe continual scaling of the skin. People with the condition have persistently dry, flaky, fish-scale like skin which may also be inflamed or thickened. Ichthyosis affects most, if not all, areas of the skin and is fairly consistent over the years. This is in contrast to other skin disorders, such as eczema or psoriasis, where scaling affects limited areas and changes frequently. Ichthyosis is rare and can be inherited or develop later in life (acquired). The inherited forms are usually evident at, or soon after, birth and tend to persist throughout life – although some milder types may improve slightly with age. Most people with ichthyosis will have inherited a particular faulty gene from their parents, which affects the rate at which their skin regenerates. This results in either the old skin cells shedding too slowly or the skin cells reproducing at a much faster rate than they can shed old skin. Either way, this causes a build-up of scaly skin. There are many types of ichthyosis. All types cause dry, scaly skin but it looks slightly different depending on which type you have. The most common form of ichthyosis is Ichthyosis vulgaris (pictured). Some of the much rarer forms include: X-linked ichthyosis Non-bullous ichthyosiform erythroderma or Congenital ichthyosiform erythroderma Lamellar ichthyosis Bullous ichthyosiform erythroderma or Epidermolytic hyperkeratosis (EHK) Harlequin ichthyosis Netherton syndrome Acquired ichthyosis is fairly mild and develops in adulthood. It can be associated with other illnesses. For more information on the different types of ichthyosis visit ichthyosis.org.uk Looking after your skin The milder forms of ichthyosis can be managed by regular moisturising, to help alleviate cracking and reduce the build up of skin cells. Your dermatologist will prescribe, or recommend, suitable emollients, including bath oils, soap substitutes and moisturising creams or ointments. People with severe ichthyosis may need to spend an hour or more a day treating their skin and some may be prescribed retinoid tablets (vitamin A), which lessen scaling in a few forms of ichthyosis. Babies with severe forms of the condition can be quite unwell and may be admitted to a special care baby unit. The benefits of membership... “I’ve often thought that the name ‘Ichthyosis Support Group’ doesn’t do the charity justice. They do so much more than this, including passing on valuable information to sufferers, keep a track on breakthrough treatments for ichthyosis from around the world and lobby for better treatment for ichthyosis sufferers. Not just a support group, a much needed ‘service’ for those that need it most.” Laura Levy, ISG member and a Mother to Son with ichthyosis. People who care about ichthyosis… Formed in 1997, by a group of individuals affected by ichthyosis, the Ichthyosis Support Group (ISG) is here for you if you suffer from the condition or care for someone who does. A registered charity, we are YOUR support group – so why not join us and become a member? The ISG provides... Information and advice about living with ichthyosis Regular contact to keep you up to date Advice from our Medical Advisory Board Links to a Support Team Access to our annual event – bringing families together to share experiences and to learn about living with ichthyosis What does the ISG do... Lobby for greater research into ichthyosis Raise awareness of ichthyosis and promote greater understanding within the medical profession Fund research Share information within the European Network for Ichthyosis ISG Vision “The ISG is committed to the on-going provision of an information network and support structure for sufferers and families affected by ichthyosis. Associated with that we need to create a greater awareness and understanding within the medical profession, and lobby for greater research into this distressing condition.” Download The ISG Leaflet To find out more about the ISG or become a member please get in touch in one of the following ways: By Phone 0800 368 9621 By Email: [email protected] By Post: Ichthyosis Support Group PO Box 1242, Yateley GU47 7FL Facebook: facebook.com/ichthyosissupportgroup Twitter: twitter.com/ISG_Charity
DLA PIP Letter Expand TO WHOM IT MAY CONCERN This individual unfortunately suffers from ichthyosis, a serious and incurable disorder of the skin. In people with ichthyosis the skin does not exfoliate in the normal way, and so a thick outer layer builds up, usually affecting most if not all of the body surface. The condition is caused by faulty genes and is congenital and life-long. The skin has an appearance that has been likened to fish scales, hence the name “ichthyosis” from the Greek word for fish. People with ichthyosis suffer from extreme and constant discomfort. The skin feels dry, tight and itchy. There is constant shedding of scales, and sometimes painful cracks and even blisters occur. In hot weather the itching is much worse, while cold causes cracking. The hair may be constantly caked with thick scale. In some patients the facial skin is so tight that the eyes cannot shut completely, leading to visual impairment from exposure and drying of the cornea. The ears become blocked with dead skin and require regular evacuation. Tightness of skin around the joints can cause disabling contractures. Some types of ichthyosis are occasionally associated with problems in other organs such as impaired immunity, spasticity and learning problems. Patients with ichthyosis suffer psychologically from the disfigurement caused by this condition. Throughout their lives they are stared at and sometimes bullied or discriminated against because of their unusual appearance. The necessity for grease on the skin, and time-out for skin care causes problems at school, seriously limits employment and leisure options, and impairs social relationships. The treatment of ichthyosis is laborious and often unrewarding. Patients must apply emollient creams and ointments repeatedly throughout the day to try and stop the skin from drying out. Additional treatments include eye ointments, antiseptics and dressings. Some patients have to be treated with potentially toxic drugs requiring regular hospital visits and blood tests. Contractures require physiotherapy and splints. An additional burden is the cost of extra clothing and laundry because ointments applied to the skin inevitably rub off onto clothes, bedding and upholstery. Ichthyosis is very rare, and as a result many people including some doctors, know nothing about it. Further information on all aspects of ichthyosis is available from the Ichthyosis Support Group. Yours faithfully, Professor Celia Moss Consultant Dermatologist Birmingham Children’s Hospital Download the DLA PIP Letter To find out more about the ISG or become a member please get in touch in one of the following ways: By Phone 0800 3689621 By Email: [email protected] By Post: Ichthyosis Support Group PO Box 1242, Yateley GU47 7FL Facebook: facebook.com/ichthyosissupportgroup Twitter: twitter.com/ISG_Charity
Contact Details Update Form Expand If you are already a member and need to change your address or contact information please fill out our Change of Details Form. Alternatively please Download The Contact Details Update Form and return to: Ichthyosis Support Group PO Box 1242 Yateley GU47 7FL To find out more about the ISG or become a member please get in touch in one of the following ways: By Phone 0800 368 9621 By Email: [email protected] By Post: Ichthyosis Support Group PO Box 1242, Yateley GU47 7FL Facebook: facebook.com/ichthyosissupportgroup Twitter: twitter.com/ISG_Charity
Ichthyosis Awareness Cards Expand If you get frustrated with other people's reactions or comments about your ichthyosis we can help. We have awareness cards that you can hand to someone to educate them. Please visit our online shop to order some cards.