‘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 wisdom or can offer any advice to anyone affected by ichthyosis please share them by emailing your ‘Top Tips’ to us at isg@ichthyosis.org.uk

Practical Tips

“To reduce the risk of ‘entrapment’ in the bathroom avoid door knobs and go for levers.”

“Try applying Vaseline (or similar) to your lips and outside area of your mouth prior to eating tomato based products (pasta sauces) this helps to prevent staining.”

“Have lever taps instead of taps that you have to turn, much easier where lots of grease and creams are involved.”

“Try Marks & Spencer underwear and school uniforms, they wash well and the elastic does not breakdown as quickly as some other brands.”

“If you have space or funds try having two washing machines at home, one just for the greasy clothes as this will help preserve the life of other clothes and the machine.  Also if one breaks down you will always have backup as those with ichthyosis appreciate the importance of a good washing machine more than others”

“If you don’t have room for two washing machines an LG Steam washing machine works wonders.  It has a cycle where it steams the grease out of clothes”

“Most washing machines are cold fill, but if you can find/afford a hot fill machine it will be worth it. We were told by a Miele advisor that the hot water hits the cream and instantly dissolves it.  That is why launderettes always get good results as they are hot fills.  Also chuck some soda crystals down the sinks once a week to break down any left over deposits”

Wash clothes separately. After a greasy wash put the washing machine on a tub clean or a hot wash with no clothes in and a Calgon tablet”

“Have a system for washing clothes. Greasy wash, tub clean, towels, darks, colours, whites. The grease will lesson each wash and not change whites to greys!”

“Inspect and clean your pipes from the washing machine at regular intervals”

“Vanish Oxy Action Magnets are great at drawing the grease out of clothes. Put one or two in every wash. (Two for very greasy clothes)”

 “Have kitchen roll available for cleaning grease off hands. (Costco do a large kitchen roll)”

“Vacuum the bed every morning”

 

Staying Cool

“Have a portable or ceiling fan in relevant rooms such as bedrooms to help stay cool.”

“Carry a small ‘spray’ bottle filled with water – instant portable sweat for those who don’t have the natural kind!”

“Cooling neck ties and wrist bands are great in hot weather”

 

Personal Care

” I am 25 years old and have Lamellar ichthyosis.  I have lived a normal life and have never been bullied in school. I have learnt that what ever it is that will make your skin look normal is on the outside, tablets and vitamins are a waste of time. Up until  the age of 15 I use to always exfoliate my skin in the bath for hours, it never did look 100% . This process was painful and it took a lot of time.  I discovered a different technique, waxing. I know this may sound scary and sore but it’s not, your waxing dead skin, this is more painful for people with normal skin, waxing off body hair. I only recommend this for my skin condition which is Lamellar ichthyosis. This process takes 3 hours and I need to do it once a week. This has changed my life, I can wear a bikini and feel confident. Its amazing I just cant put it into words. I wax my body, you cant do inside your palms or under the feet as it’s different skin and it doesn’t come off”.

“I am a 44 year old woman living with ichthyosis vulgaris, on my back, legs, face and hands.  Recently I started experimenting with moisturisers( castor oil, jojaba oil, cocoa butter etc).  I have not had any scales on my body since . I am currently using vegetable glycerine.  I use a baby bath on my skin( so that it doesn’t dry out) then i don’t dry, I just use the same bath rag and lightly pat the excess water off, then immediately lotion my body with the vegetable glycerin and it works.”

“I use Dovonex cream(CALCIPOTRIOL) which is really advertised for Psoriosis.  Secondly I have a problem with the skin building up in my ears which affects my hearing. I have had the hearing aid people look in my ears and they say “no wax,all skin”. So I am using OTEX which has 10% urea and this works very well and quickly. I have to put it in every week if I want to hear well.”

“My son has Ichthyosis, he is 3 and half months old.  We are now using a routine of 5 teaspoons of Glycerine with the same amount of warm water and mixing in a bowl. Then we use cotton wool and dab his whole body with this mixture, then we use A-Derma cream.  This is our method of moisturising, seems to hold the moisture in more, so means less creaming.  Bath time we use the above method and also add A-Derma Bath oil in the water and A-Derma Cleansing Gel as a body wash, these products also seem to help.”

“I have ichthyosis Vulgaris and moisturise using glysrin+water, or rose water, after a bath.  I find this  useful with this type of ichthyosis.”  

“Ear Itching and Scratching: Olive oil drops twice daily help to prevent build up in the ear canal and minimise the itch/ scratch pattern.  At night, use cotton wool in the ears which seems to help prevent ear scratching while asleep. Sofadex Drops, (on prescription), are good when the scratching leads to soreness, inflammation and infection. We keep a bottle handy for immediate use when necessary.”

“Scrub off the dead skin using a flannel or wash mitt and keep it well moisturised.”

“Use emollient and ‘Skinnies’ gloves at night for the palms”

“Try using a pumice stone on areas with a build up of dead skin and Eucerin cream to help remove scales.”

“Work hard at it.”

“Cream on a regular basis and talk to the experts”

“Heat up your Epaderm/Hydramol etc!  Sit it on a radiator for a while or zap it in the microwave it is much easier to apply and it won’t feel as cold when you put it on.”

“A capful of ‘Savlon’ in the bath boosts the antiseptic properties of bath additives and also helps with unpleasant smells.”

“Hi, Just to tell you I am getting good results for MILDEEN 10% urea body cream.  This I buy at ALDI.  It softens and keeps skin growth at bay. I have Lamellar Ichthyosis”.

“Gewhol med salve for cracked skin is great at softening hard plates of skin on the soles of feet”

“Dry shampoo is brilliant for refreshing greasy hair”

“A nit comb can removes scales on the scalp”

 

Treatment and Care

“I discovered Calmurid cream (with uric acid) works for me – the 500g tub with pump action is best as I can select how much i use and it lasts a long time now.  During the summer months when my skin is better, I use a wide variety:Sanctuary for Mum stuff, Aveeno, Dove cream.  Over the winter i am finding that Bio oil is good for my face – although a rather geasy finish is present for a while.”

“We have found Aloe Vera drink is an amazing product and we have never looked back since using it and we’re delighted with the results.”

“Keep trying new things!  I found homeopathy helped me at the Royal London Homeopathic Hospital.”

“Don’t be scared to ask questions.”

“For children, make sure you involve the school and be honest with them and the child.”

“In appointments with your doctor, be open and honest, pre empt possible problems and write a list before your appointment of things you need to discuss.”

“Make sure you seek a second opinion, the first is not always accurate.”

“Keep in contact with the Ichthyosis Support Group.”

“Make sure you are comfortable with your consultant, if there is a breakdown in the relationship ask to change to another, it is acceptable to do so and you will not be treated any differently for doing so.”

“When our daughter was born her oily greasy scalp, was a biggest issue, also because of the smell.  We have been using a prescription named Derma-smoothe for the scalp, already over 27 years, it really does wonders and we could not be without it.”

“If you do not get the referral you feel appropriate and the services you are entitled to, do not take ‘no’ for an answer, keep motivated and seek a second opinion, you are entitled to another opinion.” Please see our leaflet on ‘Dealing with Doctors’ http://www.ichthyosis.org.uk/wp-content/uploads/2011/02/Dealing-with-Doctors1.pdf

Other Peoples Reactions

“If people make unkind remarks, comments or simply stare try educating them by explaining about the condition or simply hand them an ISG contact card and suggest they have a look at the website” The ISG has business cards for this purpose if anyone would like any.

“If someone stares unacceptably at you or your child, stare back at them in the same way, they will feel as uncomfortable and may think twice about doing it again.”

“Don’t let other people affect how you feel about yourself.”

“If someone stares, ask them if they would like to take a photo because as the condition is so rare they are unlikely to see it again!  Then ask if you could take a photo of them, to remind you how rude and hurtful people can be sometimes – they will feel very embarrassed and maybe think about their actions.”

Motivation and Encouragement

“Take one day at a time.  Don’t get upset by others ignorance.  Your child is special and will have great character.”

“Be positive, you are unique and keep cool!”

“Talk about it, open up and don’t dwell on it.”

“As a parent or carer, always listen!”

“If you have a child with ichthyosis, try making contact and meet with an adult sufferer, it might give you hope for the future.”

“Be bold and fight for what you need”

“If you have a child with ichthyosis keep them informed and involved and make sure you talk to them about their condition, treatment and care, ask their opinion and what they want.”

“Control the ichthyosis, don’t let it control you”

“Learn to be bold and fight for the affected persons needs.  Everyone deserves a good quality of life.  Don’t accept ‘NO’ – fight for ‘YES’.”

“Make sure everyone with ichthyosis learns about the ISG.”

“Always look on the bright side for you could be worse off.  I will never let my skin beat me in life!  Be happy with yourself and realise that perhaps people don’t see your skin as bad as you see it yourself.”

“Carry on positive, do your best for the person affected, learn to look beyond the condition and love the person”

“Be positive and as bad as things may seem at first, things will get better”

“Treat and look after your skin but don’t let it take over your life, there are always people worse of than you!”

“Accept it, deal with it but don’t let it stop you achieving, it doesn’t have to.”

“Tell your child they are beautiful and give them confidence.”

“Love your child, make sure they are informed about their condition and tell them how gorgeous they are.”

“Contact the Ichthyosis Support Group!”

“Always remain positive”

“Don’t forget the grandparents, they are affected too!”

Please note the information provided on this page is not the opinion or advice of the ISG nor is it medical advice from any health professional.  The information provided is written by members of the ISG, suffers of ichthyosis and their families with the aim of sharing their experiences.  Not all advice on this page will be suitable for all those affected by ichthyosis and medical advice should be sought prior to starting new or alternative treatments and or care regimes.