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Taking care of your skin is incredibly important when you are living with FOP, so developing a good skincare regime from a young age is crucial to protect your skin and help reduce the likelihood of problems.

Your skin is the largest organ in your body and it is your body’s barrier to the outside world.  It helps to protect you from germs and virus, as well as keeps your body at the right temperature.

It is a good idea to see a dermatologist to ensure you are keeping your skin healthy because there are a number of ways FOP can affect your skin.  Dr Patricia Delai is a dermatologist as well as an FOP specialist.  She is part of the ICC for FOP and her contact details can be found on their website.

Some of the different medicines you may need to take such as high dose steroids (prednisolone) are known to thin the skin.  Only using prednisolone as prescribed can help.

If FOP causes restrictions in your body’s movement, you may find that your skin folds on itself, or it is harder for you to keep certain areas of your body clean and dry (such as the under-arm area).  It is important that you find a way to keep these areas clean and dry to prevent fungal conditions developing.  You may find a baby wet-wipe or talc can help. If you do develop a fungal infection, it is important to see a doctor so you can get some cream as soon as possible so it doesn’t get worse.

If FOP restricts your ability to bend down, it can be challenging to reach to dry your toes thoroughly after bathing.  Ask a carer to assist with any areas out of your reach.

Pressure sores can also be a concern, especially if you are not able to adjust yourself easily.  This is then exacerbated further if you have FOP bone growth near to the skin.  Try to prevent them before they occur by making sure you have a comfortable chair which is fitted to your physical needs.

FOP bone can also break through the skin or cause eczema.  Again, see a dermatologist if you are having any problems so that you can get the appropriate treatment promptly to reduce the likelihood of an infection.

If you are taking part in a clinical trial, you may find the medicine affects your skin.  Speak to your trial coordinator about the approved lotions and creams which will help soothe your skin.

Ways to keep your skin healthy:
* Drink lots of water
* Eat a healthy diet and maintain a healthy weight. A diet high in vitamin C can help to promote healthy skin and skin healing
* Protect yourself from the sun: wear sunscreen and a hat
* Limit baths and showers to one a day – not too hot either!
* Use a gently sponge or washcloth
* Don’t use abrasive products on the skin: remember your skin is a barrier to the outside world, so protect your skin from breaks
* Use a gentle, daily moisturiser, including a lip balm

Skin Care and FOP: Things you need to know but have been afraid to ask!

Dr Patricia Delai, Brazil

Dr Patricia Delai, Dermatologist, FOP specialist and ICC Member, presents a webinar on skincare and FOP.  She explains about some of the more common skin conditions and how they relate – or don’t relate – to FOP.

Watch now

Ability Toolbox: skincare resources

Some of the resources mentioned in the webinar can be found in the Ability Toolbox.  Other resources can be found through a google search.

If you find a product or lotion which you find to be helpful, please do let the team at the Ability Toolbox know so it can be added to the catalogue.

British Skin Foundation

The British Skin Foundation is the only UK charity that raises money to fund research into all types of skin diseases, including skin cancer.

They aim to raise awareness of skin diseases in the wider community. They are committed to educating people about the different skin conditions, helping to reduce stigma and promote understanding.  There is a wealth of information and advice on their website about how to care for your skin.

NHS: Pressure Sores/Ulcers

NHS provides an overview on pressure ulcers (also known as pressure sores or bedsores).

These are injuries to the skin and underlying tissue, primarily caused by prolonged pressure on the skin.  The page provides information on symptoms, treatment, prevention tactics and more.

British Association of Dermatologists

The British Association of Dermatologists (BAD) is the professional membership body for dermatologists in the UK.

The mission of the BAD is to champion dermatology in the UK for the public benefit. This means developing educational content and courses, facilitating and publishing dermatology research, running dermatology registries and more.

There is a collection of downloadable leaflets on a range of skin conditions, with links to further information.