Caring for your feet with ichthyosis

On Thursday, 16th June 2022 an online session was hosted by the ISG with Trustees present: Mandy Aldwin-Easton, Sarah Griffiths, and Sue Corbett.

Medical Professionals offering their expert knowledge:

Dr Mark O’Sullivan – podiatrist, working at Birmingham’s Children’s Hospital with children living with ichthyosis and other rare skin conditions, and in the wider community with all ages.

Paediatric Clinical Nurse Specialist in Dermatology - Sheila Richards, also working at Birmingham’s Children’s Hospital (now retired).

At 7.35 pm on Thursday, 22 June 2022, Mandy Aldwin-Easton of the Ichthyosis Support Group (ISG) opened the video conference and introduced both the ISG team and the 2 medical professionals to a number of ISG members who had registered to join this session. The members had been invited to submit their questions and concerns, along with photographs if they chose, ahead of the online conference.

These were some of the questions asked by our members –

Q1 – What is the best way to remove thickened skin from the soles of your feet? This member had tried 3% salicylic acid in emulsifying ointment, also 25% Flexitol, but this hasn’t worked.

A1 – If creams don’t work it would seem that the build up of skin is already too thick and needs to be removed first. Start with manual exfoliation, then use soft moisturizing cream.

If the skin is soft but dry and flaky you could try soaking the feet and then use a gentle nail brush.

Q2 – How is it possible to protect the skin on the top of the foot where the weight and pressure of the laces causes a problem.

A2 – Try using a protective dressing, such as Spycra Protect: this particular dressing is very malleable and doesn’t stick too strongly.

Q3 – This question was accompanied with a photograph showing the foot of a child with long, thick nails that cause distress to the child.

A3 – Good nail clippers can be used here (approx. £10 each pair). Try to shorten the nails, a little bit at a time, after soaking in a long bath, then use a suitable file to reduce them further. If the nail is too thick to shorten with clippers, try gently filing across the top of the nail to reduce its thickness first. It’s good to remember that children’s nails grow much

quicker than those of an adult – and starting a nail care routine while the child is young will ensure less distress as the child grows up.

Q4 – This question was also accompanied with a photograph showing yellowing thick skin covering most of the sole of the foot of a young adult. How is it best to remove this skin?

A4 – Don’t be afraid to file down the thickened skin with a suitable file. Should the thick skin crack, a dressing such as Duaderm Extra Thin can be used to protect the wound from bacterial infection. Creams with urea, such as Flexitol, can be used to soften the rough or dry skin, but avoid the cream spreading onto any pink, tender skin because it will sting. Moisturiser socks can be worn at night.

Handy tip: if the skin on the feet is cracking, try filing off the thick skin to allow the cream to have a better effect.

Q5 – Young child with Harlequin Ichthyosis who refuses to keep socks on her feet, so making the use of creams very difficult. Mum has tried using Skinnies, Flexitol, Duaderm, Dermatonics – these all burn the skin. Currently trying cocoa butter. Sock-ons recommended for young babies and toddlers (these make removing the socks more difficult). Mum will try using Vaseline, with a self-adhering bandage dressing.

A mum with a young son with Harlequin Ichthyosis reported that his nails grew very thin but now appear to have stopped growing altogether. He has 2 long baths each day, and she gently exfoliates his skin afterwards. Mum massages his feet regularly to separate his toes. Should the skin break and bleed, the feet are gently dried thoroughly, Cetraben is applied and then the foot is bandaged with a Skinnies sock added overnight. Around the home he wears only Skinnies socks.

Dr Mark O’Sullivan commented that, if a young child with ichthyosis has very fragile skin and refuses to wear socks (or Skinnies) he would recommend wearing footwear such as ‘Crocs’ around the home to help avoid knocks and scrapes.  Also, with serious skin conditions such as ichthyosis, it is not uncommon for the nails to stop growing or drop off, so not a great problem.

Q6 – A 14 year old with Lamellar ichthyosis has toenails that claw and grow in different directions. The nails are extremely thick and have twice been surgically removed, but the nails grew back even worse.

A6 – This problem is very difficult to manage and it isn’t uncommon in cases such as this to have the nails surgically removed. With surgical removal, the nails shouldn’t re-grow. However, podiatrists have often seen re-growths in nails where they have been removed by the GP, suggesting an incomplete removal. With full surgical removal of the nail(s) it is usually only the worst offending nails that are removed – most commonly the big toes. A chemical is applied to the area to burn off the nail – this may weep for approx. 10 days and so will cause discomfort. Should it be decided that all 10 nails be removed, only 2 or 3 nails may be removed in any one procedure. This will mean approx. 4 procedures, so a lot of discomfort over a prolonged period of time (each procedure taking up to 6 weeks to recover). So, best advice to this mum is to consider having just one or two nails on each foot properly removed and, with the help of a podiatrist, try to manage the remaining toenails.

Q7 – A young lady had submitted a photo of her foot, showing excessive hard skin and misaligned toes. Thick Vaseline is applied overnight with socks worn to keep the grease in place. A recent series of visits to the podiatrist has been disappointing as he appeared to not understand the skin condition and seemed fearful of creating a wound. This isn’t helped by the fact that her feet need to soak for a least an hour before any treatment and this is not possible in a hospital setting.

A7 – The excessive hard skin needs to be removed. If this isn’t carried out by the podiatrist then home treatment could be considered – but with great care. Check out ‘Simply Feet’ for home treatment tools. Once the layers have been removed to a better level it will be easier to maintain the foot health at home with regular management. The misaligned toes appeared not to be causing too big an issue at the moment, but slip-on shoes are best avoided in favour of lace-ups, or Velcro-fastening footwear. The shoes will need to accommodate the toes comfortably. In future years, should the toes cause problems, surgical correction could be considered.  With really thick nails and misaligned toes, where clipping is difficult, the best advice is to file across the nail(s) to reduce the thickness. A coarse file such as a rasp or a Diamond Deb will work better than an emery board. Tackle this problem after a bath (or shower) when the nail should be softer.

Q8 – A 40 year old Ichthyosis Vulgaris patient asked if thick skin on the feet and athlete’s foot goes hand-in-hand for people living with ichthyosis.

A8 – Nurse Sheila Richardson advised that soaking feet in a warm salt bath for 10 minutes is good for athlete’s foot as it is a fungus that develops in damp areas, rather than a part of the skin condition, but the condition could make someone living with ichthyosis more prone. Always dry the area between the toes thoroughly to help avoid athlete’s foot. Should toenails thicken suddenly and unusually you should check with your GP that it is not a fungal nail infection.

Q9 – Question from a 19 year old young lady with Epidermolytic Ichthyosis - How can we reduce the pain when walking on our feet?

A9 - Cushioning Insoles might help – various available – any cushioning device; Sketchers make really good footwear – contain memory foam.

Q10 – How to help or avoid soreness of small toes possibly due to pressure from toenails – feet turned in since birth.

A10 – A dressing such as Spycra could be wrapped around the toe(s) for protection. Gel tubing could help (available from Simply Feet), and Pharmacies will hold their own stock of gel tubing. Podiatrists use Otoform, which is an impression silicone (similar to the product used by dentists to take impressions in the mouth) to mould toe separators that may help relieve the soreness.

Q11 – Young child, just 16 months old, has skin growing over the toenails and struggles to walk because of the tightness of the skin. Currently awaiting diagnosis of the condition.

A11 – It is most important to keep the toenails short. Emollient should be used to keep the skin fully moisturised. You can always ask for a referral to a podiatrist for advice.

Q12 – When using Flexitol, or another Urea-based cream, should you follow that with a moisturiser?

A12 – Treat with the urea-based cream, then, before going to bed, apply Vaseline to seal it in and cover with a sock.

Note: Always patch test any new cream, and, especially with Urea-based cream, avoid the sore areas as this may sting.

At the end of the discussion session, Mark offered to try to help those members living in England and Wales who have had a problem being referred to a podiatrist by their GP, or they have had maybe just one appointment and then been discharged. Members were invited to email the ISG at [email protected] with their problem and attach a couple of photos of the affected area. The email should have ‘Trouble with Foot Care’ in the subject line and the member will need to state their home address and a brief medical history, along with the hospital they attend. Mark will endeavour to find a podiatrist within the local area and explain the issues particular to those living with ichthyosis and, hopefully, obtain a referral for that member. It must be mentioned that, due to the Covid pandemic, all NHS services are still under extreme pressure and waiting lists are long.

If a podiatrist is found with a private practice, you should check that they are registered with the Health and Care Professionals Council (qualification HCPC) before proceeding.

The discussion session ended at approximately 9.00pm and Mandy thanked Dr Mark O’Sullivan and Nurse Sheila Richards for their time and expert advice – also thanks to the members who had joined the session and shared their problems and experiences.