On Saturday 8th May 2021 the online video call was started at 10.00am and the medical team introduced to approximately 30 of our members who had registered to join this virtual meeting. The team who joined us from Birmingham Children’s Hospital consisted of Dr Malobi Ogboli, Consultant Dermatologist and Departmental Lead; Dr Marie-Louise Lovgren, Consultant Dermatologist; Dawn James, Clinical Nurse Specialist in Dermatology and Sheila Richards, Clinical Nurse Specialist in Dermatology all kindly offered their time and expertise to help those of our members who were looking for assistance with managing hair and scalp care in ichthyosis members.

Sheila Richards and Dawn James had already prepared a short video demonstrating the best method of treating the scalp where a build-up of scale was proving a problem. Watch the video and read the description below.

1. This treatment will take 2 – 3 days and so is best carried out over a weekend. Firstly when treating a young child, it is important to settle the child as this is a lengthy process.

2. The hair must be divided into a number of sections (5 or 6). Gather each section into a bunch and secure with a pony tail band. Starting at the back of the head comb through the first hair bunch to remove tangles and knots.

3. Apply emulsifying oil (coconut or almond oil is often used – but only where there is no nut allergy: jasmine oil, olive oil or tea tree oil can also be used). In cases of severe skin build-up a product called Sebco can be used but only where there is no known nut allergy as this contains coconut oil. (Sebco is only available in 100g tubes and, although available over the counter, a GP can prescribe this for children.)

NB: When using ANY product for the first time it is advised that you patch test on a small area of skin first to ensure the ichthyosis sufferer is not intolerant to the product.

4. Treat all hair sections in this way, working from the back of the head toward the front. Once all sections have been treated the head must be covered to help the emulsifying oil to soak in. You can use a wide Tubifast type bandage, shower cap, scarf or doo rag. Leave overnight (use an old pillow on the bed as the oil will soak through).

5. The following morning gently comb through the hair and wash with a mild shampoo (anti dandruff shampoos are recommended here) and then repeat the whole process for a second time.

6. On the third day wash the hair once again and allow to dry naturally if possible (using a hair dryer can cause the skin and hair to dry out and could make the hair more brittle and prone to breaking).

Regular maintenance should keep the skin build-up on the scalp under control.

You may find it necessary to repeat this complete process over 3 consecutive weekends.

Notes on some of the products mentioned above:

*Sebco – contains salicylic acid, tar and coconut oil. Salicylic acid may irritate or cause the skin to sting.

*Tea Tree oil – contains an antifungal element.

*Medicated shampoos – these are milder shampoos so won’t dry the hair out too much.

All these products should be available in most chemists – or you can try Afro-Caribbean shops.

You may also find our Removal of Head Scales factsheet useful. Click here to read it.

Questions raised by our members:

Q1. Is it OK to use Dermol 500?

A1. Dermol 500 can be used for 10-15 minutes during the daily bath. This is used to relieve itching in many severe skin conditions and can be used as a moisturizer or soap substitute. It contains anti-microbial agents, (benzalkonium chloride (0.1% w/w), chlorhexidine dihydrochloride (0.1% w/w)) so it is recommended that it is only used where there are signs of an infection.

Q2. How often should the treatment described from the video be used?

A2. With both Caucasian and Afro-Caribbean hair it is recommended that the treatment be carried out over 3 days and for 3 consecutive weekends.

Q3. Any recommendations for treating short hair as the oils just seem to run off.

A3. Treat short hair in the same manner as long hair and make sure you cover it to help the oil stay within the hair and to help with absorption.

Q4. Following the treatment the scalp can be itchy.

A4. If the child is going outside, cover the head with a hat (or similar) for protection from the elements. Carry a spray bottle filled with 3 parts water and one part oil to spray lightly over the hair to keep it moisturised.

Q5. Does Acitretin help?

A5. Acitretin is an oral retinoid. It can help manage severe ichthyosis, by reducing the thickness of the skin but it is not generally recommended for treating just hair and scalp problems – especially for females during child-bearing years. Side effects of this include increased sensitivity to sunlight causing sunburn reactions on the skin. It can also cause hair loss.

Q6. If the excess skin on the scalp is not removed will this affect hair growth?

A6. No, not directly, but there is a risk that, if the scaling is allowed to become too thick, the trauma of removing the excess scaling could cause irritation and scarring and, therefore, hair loss leading to bald patches.

Q7. There are perfumed thermal water sprays easily available on the market – can these be used on hair and scalp?

A7. You need to check the ingredients as these may not contain oil, which is essential.

Q8. Should a topical steroid be used on the scalp?

A8. Topical steroids should only be used on the scalp if eczema is present. Long term use of topical steroids can cause thinning of the skin and other side effects, so aren’t usually recommended for ichthyosis patients because they do not result in a long lasting benefit.

Q9. How can blocked hair follicles be treated?

A9. Blocked follicles, or puffy pores can occur with a build-up of scale. The recommendation is to apply emollient directly onto the scalp. Once the scale is lifted you should apply moisturiser to the base of the hair strands themselves. This will melt down into the root of the follicles.

Q10. What is the cause of unpleasant odour coming from the scalp?

A10. This could be either a fungal or bacterial problem. Try a shampoo containing one of the essential oils (such as Tea Tree Oil Shampoo). Sometimes an odour could be a build-up of old cream, so it is essential that hair is cleaned thoroughly and creams aren’t allowed to build up.

Q11. Any recommendations for dead skin migrating from the scalp to inside the ear canal within 2 – 3 days of a thorough ENT ear clean?

A11. Try a cream containing Urea – such as Eucerin. However, this should not be tried on children under the age of 5 years. Always patch test first.

Q12. Ichthyosis en Confetti – a member has a teenager with this condition and he has thick brittle hair.

A12. With this particular rare form of ichthyosis the hair structure is different. A very light oil might help.

Useful Tips:

Be careful with anti-dandruff shampoos as some contain a perfume. Our member, Amy, has found that menthol Head and Shoulders works best for her daughter who has Harlequin ichthyosis.

Calmurid is, unfortunately, no longer available. There is a new product now on the market – Udrate – which may help (speak to your GP – and always patch test).

Young child with itchy scalp at bedtime? Try a mild sedatiing antihistamine to calm the condition and settle the child, such as Piriton or Clarityn, as a temporary measure.

The ISG would like to thank both the medical team and members for their participation and for sharing their knowledge and experience.