How to avoid overexposure to sunlight for the photosensitive - Ann Haylett

LED BY GRAHAM ATHERTON SUPPORTED BY GEORGINA POWELL, MARIE KIRWAN & DEBBIE KENNEDY NAC CENTRE MANAGER CHRIS HARRIS PROTECTING THE PHOTOSENSITIVE PATIENT FROM THE SUN ANN HAYLETT SALFORD ROYAL FOUNDATION HOSPITAL, MANCHESTER Support Meeting for Aspergillosis Patients Fungal Research Trust

Programme
1pm Introduction
1:05 Ann Haylett
2:00 Tea & Coffee
3:20
Any Other Business
3:00 Close

Protecting the photosensitive patient from the sun Ann Haylett Professor L. E. Rhodes Salford Royal Foundation Trust

What is ultra violet “light”?
The sun gives us 3 things
Heat
Visible light
Ultraviolet or UV

UVA and UVB Ultraviolet Ultraviolet A UVA Ultraviolet B UVB Ultraviolet C UVC

UVA versus UVB
UVA
Main cause of drug photosensitvity
contributes to aging
Present all year round
UVB
Main cause of sunburn
Contributes to aging and skin cancer
Responsible for vitamin D synthesis by the skin

Ultraviolet is there all the time
Whenever the sun is out there is some ultraviolet ….its just a question of how much
Less in winter- more in summer
Less on a cloudy day – more on a clear day….but its always there!
And some UV is beneficial for the skin

How sensitive am I?
How you react to the sun depends on where you sit on the sensitivity scale
Normal range Type 6 Type 1 Photosensitive (Light sensitive)

How sensitive am I to the sun? Courtesy of Sun Smart, Cancer Research UK Skin type 6 Naturally brown/black skin. Usually has black/brown eyes and hair Skin type 5 Naturally brown skin. Often has dark brown eyes and hair. Skin type 4 Rarely burns, often tans. Tends to have dark brown eyes and hair.

How sensitive am I to the sun? Courtesy of Sun Smart, Cancer Research UK Type 3 Sometimes burns, usually tans. Tends to have brown hair and eyes. Type 2 Usually burns, sometimes tans. Tends to have light hair, blue or brown eyes. Type 1 Often burns, rarely tans. Tends to have freckles, red or fair hair, blue or green eyes.

Sunsmart
The Sunsmart campaign offers advice to the general public
Stay out of the sun between 11am and 3pm
Seek shade
Wear clothing if no shade is available: T-shirt, hat and sunglasses
Use sunscreen (SPF15)

How sensitive am I? Normal range Type 6 Type 1 Photosensitive

Photosensitive patients
Taking medication that may make you more sensitive
Photosensitivity disorder/sun allergy
Genetic disorder that puts you at risk of skin cancers

Photosensitivity/Sun allergies
Photosensitive patients:
react to very small amounts of light.
Can have reactions that look just like sunburn but happen with much much lower doses of light
Can have symptoms including redness, itching, pain, blisters and swelling

Photosensitivity /sun allergies
Photosensitive patients:
It can take a day or two after sun exposure for the symptoms to appear
If you keep going back out in the sun the symptoms may be there all the time

Sun protection for photosensitive patients

Sun protection
There are 3 main ways to protect yourself from the sun
Spending less time in the sun
Physical Barriers
Sunscreens

Seek Shade
The sun is strongest between 11 and 3pm and during this time you should seek shade
Different people can get away with more or less exposure

Seek Shade
But it isnt practical to avoid the sun all the time so if you do have to go out during those times seek natural shade
The shade should be deep shade!

Seek shade
Light bounces from different surfaces
80% reflects from snow
It also reflects from sand and concrete….

Seek Shade
Imagine you are sitting on a patio under a parasol
The parasol protects you from the light above but the light can bounce up from the concrete and hit you in directions you weren’t expecting.
The solution is to be in the deep shade

Physical barriers
Hat
Broad brim
Not straw
Dark colour
Baseball cap only protects the top of your head and your nose! Ears, cheeks, neck will all still catch the sun

Physical barriers

Physical barriers
Sunglasses
Should be 100% UV protection (look for the CE mark and BSEN 1836:1997 or sunglasses marked UV400)
Should be large or wrap around
Opticians provide UV coatings on regular glasses that is clear. If you don’t like wearing dark glasses in the winter discuss with your optician about the possibility of “clear sunglasses”

Physical barriers - clothing
Clothing
Can be effective in stopping the light reaching your skin
Long sleeves and trousers
Shoes or trainers rather than sandals
Shirt collars provide protection for the neck
Silk scarf or Buff™ can help protect the neck
Consider gloves

Don’t assume all clothes are effective in protecting you from the light
Many things can affect how much light will pass through fabric
3 most important are:
Weave
Material
Colour

Weave
The stucture of the weave (knitted, woven etc)
The weight (how heavy the fibres are and how many were used)

Fabric should preferably be dark not white
Many people think it’s the other way round!
Dark colours are best

Material type
Good choices include silk, cotton, polyester

Other factors can also have an effect
Whether the fabric is wet (eg sweating)
Whether the fabric is stretched
The SPF of cotton goes up the first time it is washed
How the fibres were processed in the factory (bleaching, treatments to make dying easier, permenant creases etc)

How to check whether a fabric lets the light through
Hold it up to the light and look at the weave. Does it look like it lets a lot of light through?
Trust your rash. If the rash has come up under your clothes then the light has come through
Keep a bit of a diary about what you wear. If your rash appears the day after sun exposure you can look back to what you were wearing

Optical Brighteners
Optical brighteners are added to soap powders and may improve UV protection of clothes

Physical barriers
Choose dark fabrics if possible
Choose loose fitting clothes if possible
Remember the fabric may let more light through when wet
The more a fabric stretches the more light it lets in.

Physical barriers- glass
Windows block UVB but let UVA light straight through
In cars the front window is laminated by law and therefore doesn’t let UV through.
The side windows on a car will let through UVA

UV and glass
UVA light will also flood into a conservatory
You should not sit near an unshielded window that does not have UV window film applied (especially at work or in school)

UV blocking window film
UV window film is a clear film that comes on sticky backed plastic and blocks UV light
Its not the same as tinted window films
UV film is effective for sun allergies to UVA
It will also stop your fabrics fading!

UV Window film
Bonwyke Ltd,
Unit 3, Salterns Lane Industrial Estate, Salterns Lane
Fareham, Hampshire, PO16 0SU
Tel: +44 (0) 1329 289621
Email: sales@bonwyke.co.uk
www.bonwyke.co.uk
Madico UK,
Madico House, 98 Bolton Road
Atherton, Manchester, M29-9LD
Tel: 01942 891790
Alternative contact(s):
High Wycombe Tel: 01494 450681
Huddersfield Tel: 01484 515933
London Tel: 020 8441 0449
Stafford Tel: 01785 242181
www.madicouk.com
Summerside Blinds,
Unit 14, North Leith Sands, Lindsay Road
Industrial Estate, Leith, EDINBURGH EH6 4ER
Tel: 0131 553 1073 Fax: 0131 533 1073

Technical details
In general UV protective films block all UV from 300 to 390nm
They only lets through approximately 1% of UV light between 390 and 400nm
Between 400 and 410nm they let through 46% and between 410 and 420nm they let through 63.5%

Sunscreens
Available on prescription for patients with sun allergies

Sunscreens
The sun protection factor (SPF) relates to UVB protection
The star rating relates to UVA protection

Look for SPF30 or above and a star rating of 4 or 5
Sunscreens can go off in the heat so avoid storing them in direct sun, hot cars etc
Sunscreens usually last for 12-18 months once open

Sunscreens
You should apply suncreen generously
around two teaspoonfuls of sunscreen if you're just covering your head, arms and neck.
around two tablespoonfuls if you're covering your entire body.

Sunscreens
Apply smoothly and evenly
Reapply frequently ie before going out and at roughly 2 hour intervals

Sunscreens
Don’t rub a sunscreen in
Why?
UV UV UV

Sunscreens
Treat “waterproof” and “once a day” claims with caution
Sprays, “oils” and roll-ons can result in you applying less
Most people don’t apply enough sunscreen!

Sunscreens
On darker skin application of a white sunscreen will make the skin look purple. This is not very cosmetically appealing
Solutions include
mixing in a little of a very dark tinted foundation
Mixing with Dundee cream
Choosing the sunscreens without titanium or zinc oxides (eg Sunsense Ultra)

Sunscreen
Dundee Cream
Made in Dundee
Comes in beige, coffee or coral
Specially made to block visible light
Available from hospital pharmacy

Using sunscreens with your other skin treatments
If you are using a moisturiser or a steroid cream make sure that is applied before your sunscreen
Wait 20-30 minutes after applying before you put your sunscreen on

Vitamin D
Essential for healthy bones
Mostly made in the skin when it is exposed to UVB
Photosensitive patients who have to avoid the sun may not make enough vitamin D
Speak to your doctor

Any questions?

Vox-Pop recordings
Raising awareness about aspergillosis & the NAC.
One person at a time, talking for one to two minutes on the following:
What sort of aspergillosis do you have?
How has it affected your life?
How has having access to the National Aspergillosis Centre helped your symptoms and helped you live your life a little more comfortably (if at all)

Vox-Pop recordings
5 recordings successfully processed and put onto a web page
Go to ‘Video Resources’ on the patients website at www.aspergillus.org.uk
Right hand side click on ‘Clip1’ to ‘Clip5’ to go to ‘Patient Clips’
http://www.aspergillus.org.uk/newpatients/patientvideoclips.php
Getting rave reviews from Prof Denning & Jenny as we managed to get a great ‘mix’ of conditions & opinions– job well done!
They want to do more…

Recipe Book
Funguide Cook book – keep sending in recipes
Stuffed Mushrooms
Mushroom Risotto
Steak in red wine & mushroom sauce
Mushroom soup
Lambs liver & mushrooms
Cheese and Ale on toast
Staff also promising contributions
How many do we need?

Alternative medications
New resource to allow us to tell what is a useful ‘alternative’ medication (i.e. none-prescription) at a glance
http://www.informationisbeautiful.net/play/snake-oil-supplements/
Will place this on the Patients website at www.aspergillus.org.uk

Dietary Supplements

Unused drug donations
Just before Christmas we received thanks for
£38 000 - worth of drugs sent to InterCare (collected for most of last year) which had already been sent out to clinics in Tanzania
Thanks For your Help!!

UHSM Staff Awards
UHSM have an awards system designed to recognise outstanding contributions to all aspects of work in the hospital including patient care
Patients are encouraged to nominate their choice to put forward any member of staff that they would like to see rewarded for going the extra mile, demonstrating excellent work or creating extraordinary patient care.
Forms available at http://www.uhsm.nhs.uk/working/Pages/awards.aspx

Happy New Year from everyone in the National Aspergillosis Centre The next meeting is on February 2 nd and will be on our first conclusions on much of the Quality of Life data we have now analysed and processed. (Khaled Al-shair) The first batch of data has been submitted for publication

Thank You
“ The best chance we have of beating this illness is to work together”
Living with it, Working with it, Treating it
Fungal Research Trust

How to avoid overexposure to sunlight for the photosensitive - Ann Haylett

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How to avoid overexposure to sunlight for the photosensitive - Ann Haylett Webinar Transcript