Practical Guidance for Living with Xeroderma Pigmentosum (XP)
Welcome to our Advice Hub.
As our charity closes, we want to ensure that individuals and families living with Xeroderma Pigmentosum (XP) continue to have access to practical, reliable information. This page brings together guidance, tips and trusted resources to help you manage daily life safely and confidently.
Every person’s experience of XP is different. Please always speak to your specialist medical team for individual advice.
As our charity closes, we want to ensure that individuals and families living with Xeroderma Pigmentosum (XP) continue to have access to practical, reliable information. This page brings together guidance, tips and trusted resources to help you manage daily life safely and confidently.
Every person’s experience of XP is different. Please always speak to your specialist medical team for individual advice.
UV Protection
Clothing & Accessories
Where possible source clothing which carries the UV Standard 801 badge. This is deemed to be the highest standard when rigorously tested.
http://www.columbia.com/freezer-zero-neck-gaiter-CU9504.html
If finding a safe area for shoe fitting proves difficult you can purchase your own size gauge directly from Clarks (ideal for children) which means you can measure safely at home and order online.
Where possible source clothing which carries the UV Standard 801 badge. This is deemed to be the highest standard when rigorously tested.
- Buying Standard 801 clothing online: https://www.hyphen-sports.com/shop/en/sun-protection/
- Elle Gloves: https://athrohab.co.uk/shop/ - listed under other essentials
- To combat fogging up of misting in cooler climates there are a range of solutions from home products such as washing up liquid to high performance liquids such as Salclear D-Mist +: https://www.salclear.com/
- Accessories/buffs: There are a great range of UV buffs which can be useful: http://www.buffwear.co.uk
- Accessories/Gloves: UV protective gloves are available in child and adult sizes via Hyphen: https://www.hyphen-sports.com/shop/en/sun-protection/
- Cooling: Here are some useful links for clothing to help with core cooling and comfort: https://stacoolvest.com/collections/all-products
http://www.columbia.com/freezer-zero-neck-gaiter-CU9504.html
If finding a safe area for shoe fitting proves difficult you can purchase your own size gauge directly from Clarks (ideal for children) which means you can measure safely at home and order online.
At Home Protection
UV radiation passes through ordinary glass, consider installing UV-blocking window film (e.g., Dermagard) at home and work.
Similar films can also be fitted on car windows through auto window tint installers.
Contact Details: http://www.bonwyke.co.uk/window-films/dermagard/
Email: [email protected]
Similar films can also be fitted on car windows through auto window tint installers.
Contact Details: http://www.bonwyke.co.uk/window-films/dermagard/
Email: [email protected]
Out and About
- Use a UV light meter to measure and assess UV levels in outdoor or public spaces. Consistent readings help decide whether an environment is safe.
- When testing, compare meter readings against a known safe surface (such as against Dermagard film).
- NOTE: With the PUV we work to an absolute figure of ZERO, however all meters are weighted slightly differently. We advise that you test what your meter reads when against Dermagard, and use this as your ZERO.
Various meters are available: www.merlinlazer.com or https://www.enfantsdelalune.org/page/478214-boutique
Health & Nutrition
Vitamin D
- XP patients cannot use sunlight to make Vitamin D in the skin. It is essential to supplement Vitamin D for healthy development and overall wellbeing.
- In the UK, Vitamin D supplements can be prescribed via GP or purchased online - http://www.betteryou.com
- Oral sprays (like D-Lux sprays) make easy dosing for children and adults alike, but always consult a GP or specialist for correct dosage advice.
- NHS guidance on the importance of Vitamin D is highly recommended.
Travel and Day-to-Day Tips
Public toilets can be unsafe due to UV exposure-risk, compact urine bottles for adults and children are useful to carry. www.completecareshop.co.uk - Unisex
A laminated sign for your car can quickly communicate that daylight exposure is unsafe for the passenger.
- Carry a UV protective poncho for changing areas.
- Always have a medical letter with key information and consultant contact details when away from home.
- Consider a medical alert device (bracelet/seatbelt alert) that can help others in emergencies. Amazon also has options too: https://theidbandco.com/?gclid=CKO3t_avn8cCFYYfwwodLy8L_Q
- Travel blinds (like portable screens) help create safe spaces in car boots or for overnight stays. https://www.tommeetippee.com/en-gb/shop/sleeping/nursery/nursery-accessories/portable-blackout-blinds
A laminated sign for your car can quickly communicate that daylight exposure is unsafe for the passenger.
Fun stuff
Here are a few ideas and useful links to bring extra fun to night play and some safe daytime fun too.
In the day
UV reactive bands can be a useful way to explain the invisible presence of UV in the environment around them. There are many products out there, and the following link have a lovely range to suit any age.
www.purpleturtle.co.uk
Night garden:
Night time adventures:
The Natural History Museum, London: Late night viewing and Dino Snores (children's camp out)
In the day
UV reactive bands can be a useful way to explain the invisible presence of UV in the environment around them. There are many products out there, and the following link have a lovely range to suit any age.
www.purpleturtle.co.uk
Night garden:
Night time adventures:
The Natural History Museum, London: Late night viewing and Dino Snores (children's camp out)
Schooling, Education and Young People
Education planning is a vital part of supporting children and young people with XP.
You may wish to explore:
Video Links
The following third party web links have been identified as useful supporting teaching aids to bring to life some of the more complex themes such as genetics and understanding DNA.
E-teacher training CPD
To help you deliver these resources with confidence to your class we have created a bespoke CPD package for your enhanced learning. Download your complete CPD package here: school_xp_training.pptx
You may wish to explore:
- Education, Health and Care Plans (EHCPs)
- Safe classroom adaptations (window film, lighting checks)
- Supervised indoor break arrangements
- Flexible attendance or remote learning options where appropriate
- Clear communication with schools is essential. Provide medical letters explaining UV risk and safety requirements. Transition planning between primary, secondary and further education should begin early to ensure continuity of support.
- Finding appropriate education and safety arrangements can be complex. Useful sources include:
- Special Needs Jungle - covering education transitions, EHCP plans, and more.
Video Links
The following third party web links have been identified as useful supporting teaching aids to bring to life some of the more complex themes such as genetics and understanding DNA.
- Video 1: Little Ted and Friends
- Video 2: Little Ted goes to school...
- Video 3: Explaining DNA to a six a year old
- Video 4: What is DNA and how does it work?
- Video 5: What Genes means (Genetic Disorders UK)
E-teacher training CPD
To help you deliver these resources with confidence to your class we have created a bespoke CPD package for your enhanced learning. Download your complete CPD package here: school_xp_training.pptx
Support for Families and Carers' - UK
Caring for someone with XP involves significant daily responsibility. There are practical and financial support systems available in the UK.
We have created a downloadable PDF guide with step-by-step information on:
Click Here to Download
Parents Guide to Completing a DLA Form for a Child with XP
Guide to Completing a PIP Application for Adults with XP
These benefits can help reduce financial pressure and support safe living arrangements.
When completing applications:
We have created a downloadable PDF guide with step-by-step information on:
- Applying for a Blue Badge (disabled parking)
- Applying for Disability Living Allowance (DLA) for children
- Applying for Personal Independence Payment (PIP) for adults
- NHS travel cost reimbursements
- Disabled Facilities Grants (for UV window film)
- Carer’s Allowance
- Energy support schemes
Click Here to Download
Parents Guide to Completing a DLA Form for a Child with XP
Guide to Completing a PIP Application for Adults with XP
These benefits can help reduce financial pressure and support safe living arrangements.
When completing applications:
- Always describe your worst days
- Clearly explain the serious medical risk of UV exposure
- Include supporting medical evidence wherever possible
- Keep copies of everything you submit
Mental Health Support
Living with a rare condition like XP can affect emotional wellbeing for individuals and families.
Feelings of isolation, anxiety and exhaustion are completely understandable. Support is available.
Rare Minds have previously provided funded support for individuals and families affected by XP and they still have spaces available if you would like to reach
out to them for support - their contact details are:
Rare Minds
Website: https://www.rareminds.org/
We are also grateful that Amy and Friends have offered access to bereavement counselling services through Love Jasmine. If your family has experienced loss connected to XP, please know that specialist, compassionate support is available - their contact details are:
Love Jasmine
Website: https://www.lovejasmine.org.uk/
Feelings of isolation, anxiety and exhaustion are completely understandable. Support is available.
Rare Minds have previously provided funded support for individuals and families affected by XP and they still have spaces available if you would like to reach
out to them for support - their contact details are:
Rare Minds
Website: https://www.rareminds.org/
We are also grateful that Amy and Friends have offered access to bereavement counselling services through Love Jasmine. If your family has experienced loss connected to XP, please know that specialist, compassionate support is available - their contact details are:
Love Jasmine
Website: https://www.lovejasmine.org.uk/