Patient Information Pack
Xeroderma Pigmentosum (xp) Patient Information Pack
Ever since the Charity was set up , it has been a dream to produce an information pack that will help patients and their families from diagnosis through the different stages of their life. We have been able to achieve this with a grant that we received from Jeans for Genes in 2006.
The pack consists of 12 Information Leaflets as follows:
- What is the XP Support Group?
- What is XP?
- Getting Medical Advice
- Getting help from Social Services
- Out and About
- Protection from the Risks of UV
- Genetics of XP + XP Top Tips
- XP at the different stages of Life
- What is UV?
- Owl Patrol weekend Camp
- XP Fundraising
Xeroderma Pigmentosum (xp) Specialist Clinic
The NHS funded XP Multi-Disciplinary clinic was established in April 2010 to assist consultants in caring for their Xeroderma Pigmentosum (xp) patients. It provides Photodermatology, Dermatological Surgery, Neurology, Ophthalmology, Psychotherapy and Genetics based at St Thomas’ Hospital in London and Diagnostic laboratory Led by Professor Alan Lehmann at the University of Sussex. The Service has two Clinical Nurse Specialist who provide outreach services for adults and Children. The XP Support Group is an integral part of the service giving feedback on the patient experience of the Service and also by providing financial assistance for patients to attend the clinic. For details of assistance please email [email protected]
Click here to download our article that was published in the British Medical Journal. It is our story about how we deal with XP as a family.
How to make a face mask
You will require:
- A legionnaires sun hat with a stiff peak
- Stick and sew velcro
- UV protective film available free from XP Support Group
Assembly Instructions:
1. Attach the sew part of the velcro to the Legionnaires hat along the peak and down the two sides.
2. Cut the protective film to fit along the peak. (It is better to cut the lower part when the hat is on the subject so you can see how far you need to come down to cover the neck and shoulders).
3. Stick the velcro to the plastic film and attach to legionnaires hat.
4. Finish off by cutting the film to the required length.
A mask lasts about 3 months depending on the wear. Replace when it becomes scratched. Use the old mask as a template.
Suppliers of UV protective equipment & Clothing
- Sun Togs
Sun Togs have been taken over and are trading again at the following address:
Litton House
Saville Road
PETERBROUGH
PE3 7PR
Tel : 01733-765030
Fax : 01733-765210
- Sunsibility
Suppliers of clothing for adults and children
3 Chadacre Road
Stoneleigh
Epsom
Surrey
KY17 2HD
Tel: 0208-224-0834
E-mail : [email protected]
Contact: Angeli Khatri
- Sun Precautions
Suppliers of a wide range of adults and childrens sun protective clothing
2815 Wetmore Avenue
Everett
Washington
98201
USA
Tel: 1.800.882.7860
- Bonwyke Window Films Ltd
Bonwyke are the suppliers of Dermagard, the only UV protective film in the UK that has been specifically tested for use by patients with light sensitive conditions. Bonwyke offer members of the XP Support Group a discount on the film.
- Rohan
Rohan Direct Range of clothes for adults. Some of their clothes offer sun protection of a minimum of SPF 30.
Tel : 0870 601 2244
Rohan Designs Ltd
Tel : 01908 517900
30 Maryland Road
Tongwell Milton Keynes
MK15 8HN
- Sunsuits
Sunsuits offer a small range of protective clothing from Australia for children. Sunsuits also give a percentage of their profits to The XP Support Group.
Contact : Julie Yardley
Links to our sister groups abroad
USA – XP Family Support Group www.xpfamilysupport.org
GERMANY – Freunde die Mondschein Kinder www.xerodermapigmentosum.de
FRANCE – Enfants de la Lune http://asso.orpha.net/AXP/debut.htm
SOUTH AFRICA – www.xpsociety.co.za
TUNISIA - www.xp-tunisie.org.tn
SPAIN – [email protected]