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

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Ann Haylett gives a detailed talk on the avoidance of sunlight for patients suffering from acute sensitivity to sunlight e.g. a side effect of taking voriconazole

Ann Haylett gives a detailed talk on the avoidance of sunlight for patients suffering from acute sensitivity to sunlight e.g. a side effect of taking voriconazole

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  • some people will tell me they are OK as long as they stay out of the sun between10 and 4pm others cant go out in the sun after 6 in the morning or before 6 in the evening

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  • 1. 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
  • 2. Programme
    • 1pm Introduction
    • 1:05 Ann Haylett
    • 2:00 Tea & Coffee
    • 3:20
      • Any Other Business
    • 3:00 Close
  • 3. Protecting the photosensitive patient from the sun Ann Haylett Professor L. E. Rhodes Salford Royal Foundation Trust
  • 4. What is ultra violet “light”?
    • The sun gives us 3 things
      • Heat
      • Visible light
      • Ultraviolet or UV
  • 5. UVA and UVB Ultraviolet Ultraviolet A UVA Ultraviolet B UVB Ultraviolet C UVC
  • 6. 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
  • 7.
    • 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
  • 8. 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)
  • 9. 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.
  • 10. 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.
  • 11. 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)
  • 12. How sensitive am I? Normal range Type 6 Type 1 Photosensitive
  • 13. Photosensitive patients
    • Taking medication that may make you more sensitive
    • Photosensitivity disorder/sun allergy
    • Genetic disorder that puts you at risk of skin cancers
  • 14. 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
  • 15. 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
  • 16. Sun protection for photosensitive patients
  • 17. Sun protection
    • There are 3 main ways to protect yourself from the sun
      • Spending less time in the sun
      • Physical Barriers
      • Sunscreens
  • 18. 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
  • 19. 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!
  • 20. Seek shade
    • Light bounces from different surfaces
    • 80% reflects from snow
    • It also reflects from sand and concrete….
  • 21. 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
  • 22. 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
  • 23. Physical barriers
  • 24. 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”
  • 25. 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
  • 26. Physical barriers - clothing
    • 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
  • 27. Physical barriers - clothing
    • Weave
      • The stucture of the weave (knitted, woven etc)
      • The weight (how heavy the fibres are and how many were used)
  • 28.
  • 29. Physical barriers - clothing
    • Fabric should preferably be dark not white
    • Many people think it’s the other way round!
    • Dark colours are best
  • 30. Physical barriers - clothing
    • Material type
    • Good choices include silk, cotton, polyester
  • 31. Physical barriers - clothing
    • 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)
  • 32. Physical barriers - clothing
    • 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
  • 33. Optical Brighteners
    • Optical brighteners are added to soap powders and may improve UV protection of clothes
  • 34. 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.
  • 35. 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
  • 36. 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)
  • 37. 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!
  • 38. 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
  • 39. 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%
  • 40. Sunscreens
    • Available on prescription for patients with sun allergies
  • 41. Sunscreens
    • The sun protection factor (SPF) relates to UVB protection
    • The star rating relates to UVA protection
  • 42.
    • 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
  • 43. 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.
  • 44. Sunscreens
    • Apply smoothly and evenly
    • Reapply frequently ie before going out and at roughly 2 hour intervals
  • 45. Sunscreens
    • Don’t rub a sunscreen in
    • Why?
    UV UV UV
  • 46. 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!
  • 47. 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)
  • 48. Sunscreen
    • Dundee Cream
      • Made in Dundee
      • Comes in beige, coffee or coral
      • Specially made to block visible light
      • Available from hospital pharmacy
  • 49. 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
  • 50. 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
  • 51.
    • Any questions?
  • 52. 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)
  • 53. 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…
  • 54. 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?
  • 55. 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
  • 56. Dietary Supplements
  • 57. 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!!
  • 58. 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
  • 59. 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
  • 60. 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