Allergic to Sunlight! Please help soothe the pain and itch.

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Kerry has Actinic Prurigo, a severe allergy to UV light.

Her Symptoms are:

  • Burning pain
  • Severe itch
  • Living in the dark
  • Sleepless nights
  • House bound
  • Infection

Solution:

  • A hydrotherapy bath that uses new MicroSilk® technology

How the target fund of $20,000 would help:

  • A MicroSilk® hydrotherapy bath
  • Extension to her bathroom in order to fit the hydrotherapy bath (Council approval granted)

Here’s Kerry’s full story:

Kerry has a very rare skin disease called Actinic Prurigo. This is a severe allergy to UV light which includes sun light, most indoor lighting, light coming through windows and also through clouds. Actinic Prurigo is defined as a rare auto immune disease which causes an abnormal reaction to UV light, causing pain and chronic itch to exposed areas of skin, but it can also spread to unexposed areas. It affects less than 20 people in Victoria, Australia. Kerry’s body is in a constant state of allergic reaction. The allergy level in her blood is over 100 times higher than it should be.

Kerry has had severe Actinic Prurigo for over 10 years and has also had eczema, asthma and allergies since she was a baby. Her eczema is now also sun and heat sensitive. It is thought that her sun allergy started as a teenager, around the age of 14, but as it is extremely rare and she already had chronic eczema it was easily missed. Kerry spends a lot of time in hospital for weeks at a time being constantly wrapped in wet dressings and treated for infections with strong antibiotics. She is on strong immunosuppressive drugs and has also been on Thalidomide in the past. She lives in the dark with all of her windows covered with roller shutters and her blinds always closed. As fluorescent lights and energy saving light globes contain UV, her house has been converted to UV free LED lighting. Even though these lights do not contain UV, when Kerry’s skin is flared these lights also cause her a lot of pain and discomfort, so she spends most of her time in the dark.

Kerry wears protective clothing that is UPF 50+ as well as thick weave clothing that stops the light getting through to her skin. She always wears a hat and sunglasses along with bandages on her arms and hands. Sunscreen is not effective in protecting her skin and she also has an allergy to an ingredient in it. Even with these precautions Kerry’s skin is constantly covered in an itchy uncomfortable painful rash.

When Kerry is exposed to UV light her skin becomes very hot, red, itchy and painful and she feels as if she is being burnt, similar to sun baking on a 40 degree day. The full reaction starts hours later and continues to react for days. The delayed reaction Kerry experiences starts around 8-20 hours after the initial exposure, normally starting between midnight and three am. This continues for hours and days with no relief. When the reaction begins, Kerry’s skin becomes extremely itchy and painful. She experiences sharp nerve pain throughout her whole body and a feeling of ants crawling under her skin. The rash starts to appear and spread over the coming hours and days. Once the reaction starts, Kerry spends the whole night awake doing whatever see can to try and calm her body down. From multiple medications for pain and itch, many different ointments and creams, wet dressings and bandages, ice packs and cold showers, to even going outside in the middle of the night in the cold air to cool down, Kerry has tried it all!

Because of this delayed reaction, Kerry is unable to leave her house every day. Being exposed to UV multiple days in a row does not give her skin a chance to recover and is physically exhausting. Even restricting herself to only going out at night does not stop a reaction as fluorescent lighting, especially those in shopping centres, can be worse than the sun for her. Along with the rash, Kerry also has constant pain and severely itchy skin, swelling to her face and hands, sensitive eyes, conjunctivitis, migraines, nausea, insomnia and constant exhaustion. Her skin becomes very tight and stiff especially around her wrists and knees and she has trouble straightening her legs. She often can’t turn her head as the skin on her neck gets so inflamed and sore that it cracks, splitting open causing the skin to bleed and become infected.

At the age of 35, Kerry takes over 30 tablets a day just for her skin alone, she uses 8 different topical ointments and lotions with bandaging multiple times a day. Wet dressings are applied daily which includes covering her whole body and face with 3 different ointments and then putting on pyjamas soaked in cold water (cold as she cannot tolerate heat) and a special oil. Wet bandages are applied over the wet pyjamas to force close contact with her skin. Kerry then sits in these cold, dripping wet dressings for 1-2 hours. This process is repeated up to four times a day when her skin is flared. She also has to have bleach and salt baths to try and avoid infections and soften her skin. As her house does not currently have a bath or room for one, she has to splash the bleach solution on to her skin. This is not practical or effective and her doctors have been encouraging her to install a bath for many years to help in the management of her skin disease. As Kerry cannot work full time due to her UV allergy, financially this hasn’t been an option for her.

Recently Kerry discovered a hydrotherapy bath that uses a new MicroSilk® technology that has had a lot of success in treating eczema, psoriasis and other extreme skin conditions overseas. This bath is now available in Australia with promising results. The bath is very expensive and in order to fit any bath into her bathroom Kerry will have to extend on to her house. Although costly, her specialists have continued to recommend that she does this in order to soak her skin in oils, salt and bleach to try and keep it soft, hydrated and clear of infections. Using the bath at home should reduce the number of hospital admissions that Kerry currently needs as she will be better equipped to conduct some treatments herself at home. Below is some information from Endless Spas about the hydrotherapy bath.

Kerry has had approval from her local council to complete the extension but needs help in raising the funds to complete her bathroom. We are reaching out to the community to ask for assistance in completing the bathroom and purchasing this bath for Kerry, to help her live a more comfortable life. Any help no mater the size is of great assistance to Kerry and would be forever appreciated.

From Endless Spas- “MicroSilk® is now available at Endless Spas. This patented technology provides exfoliation, hydration, cleansing, and itch relief to those diagnosed with eczema through the gentle power of oxygen-rich micro bubbles injected into the spa.”

“While irritants in the environment can trigger an outbreak of eczema, MicroSilk® provides an additive-free cleansing experience to relieve itching. Normal tap water becomes a source of pure relaxation as microbubbles enter the spa and increase oxygen levels in the water up to 70%. MicroSilk® microbubbles are tiny—50 microns in diameter—small enough to enter pores, to cleanse, hydrate, and gently exfoliate the skin.”

Thank you for taking the time to read Kerry’s story.

Updates

Hi everyone, thank you for all your support. Your generosity meant that I would be able to afford to buy the bath I desperately need. I have decided however to extend the campaign to allow more time to reach my goal. I will keep you updated on the progress.

Backers

  1. Thi Huong Nguyen
    $20.00
  2. the manda and Pam fryers
    $50.00
  3. josh and ben fryera
    $5.00
  4. Jocelyn Castley
    $20.00
  5. Bacchus Marsh Medical Centre
    $125.00
  6. Helen Hunter
    $20.00
  7. Werribee Hyundai Werribee Hyundai
    $500.00
  8. Anonymous
    $30.00
  9. karen Vella
    $50.00
  10. Anonymous
    $1,000.00
  11. Thassaneeya ING Namvong
    $20.00
  12. Luke Donlon
    $500.00
  13. Diane Camilleri ( ranga's sister ! )
    $50.00
  14. Ruth Tully
    $15.00
  15. Fiona Young
    $20.00
  16. Robyn Scott
    $50.00
  17. Jenny O'Ryan
    $25.00
  18. Sarah Basile
    $50.00
  19. Sharon Mayne
    $20.00
  20. Robyn Koch
    $50.00
  21. paul freedendal
    $15.00
  22. Shelly & Jim
    $100.00
  23. Anonymous
    $100.00
  24. Aunty Shirl & Uncle Ray Tribe
    $50.00
  25. selina
    $5.00
  26. erin hobbs
    $20.00
  27. Anonymous
    $50.00
  28. Natalie banner
    $20.00
  29. Cindy Buysen
    $25.00
  30. Pam Robinson
    $50.00
  31. Cat Bajowski
    $5.00
  32. karima amar
    $5.00
  33. Anita Woolley
    $50.00
  34. Anonymous
    $20.00
  35. mark & ross
    $50.00
  36. Anonymous
    $50.00
  37. Aimee Page
    $10.00
  38. Merilyn Flavell
    $50.00
  39. Kasey Clennett
    $20.00
  40. Luke Page
    $5.00
  41. Joan Lindsay
    $50.00
  42. Anonymous
    $1.00
  43. Anonymous
    $5.00
  44. Ben Kleinberg
    $50.00
  45. sonia owen
    $20.00
  46. Kylie Hughes
    $20.00
  47. Valerie Mangion
    $50.00
  48. Anonymous
    $20.00
  49. Heather Wiggins
    $15.00
  50. Anonymous
    $50.00
  51. Anonymous
    $15.00
  52. Lynne hamill
    $50.00
  53. cindy palmer
    $10.00
  54. Penne Lamb
    $15.00
  55. Lauren Baars
    $20.00
  56. Rebekah Wisewould
    $30.00
  57. Wendy Gerring
    $250.00
  58. Sarah Round
    $20.00
  59. Nicole Hovell
    $50.00
  60. Kristy Koch
    $50.00
  61. Jodee Underwood
    $50.00
  62. Melissa Ferguson
    $100.00
  63. Linda Bramwell
    $20.00
  64. Nicky Mcsaveney
    $40.00
  65. Geoff Taylor
    $5.00
  66. Anonymous
    $5.00
  67. Marco Cococcia
    $5.00

This Campaign has ended. No more pledges can be made.