Posts - Xeroderma Pigmentosum UK | HealthUnlocked

Xeroderma Pigmentosum UK

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XP VISOR WANTED TO PURCHASE URGENTLY

Hello , im looking to purchase an XP visor for my friends 11 year old and having no luck, please could someone point me in the right direction? do they even...

Hello , im looking to purchase an XP visor for my friends 11 year old and having...

•2 years ago

What are the tests that confirms the disease XP?

Sorry if this is a basic question- I am new here

Sorry if this is a basic question- I am new here

•2 years ago

Hi people, Can someone suggest me a doctor in Manchester for XP?

Who can give online consultation?

Who can give online consultation?

•2 years ago

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Blue badge update

https://www.telegraph.co.uk/news/2019/08/29/parking-permits-extended-people-hidden-disabilities/ People with hidden disabilities can apply for blue badge...

https://www.telegraph.co.uk/news/2019/08/29/parking-permits-extended-people-hidd...

Administrator•3 years ago

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XPC kid and school

My child will be joining the school next semester, through my search I have read that there is a check list that parents should share with the school to make...

My child will be joining the school next semester, through my search I have read...

•4 years ago

About me

I am a university student diagnosed with Xeroderma Pigmentosum (XP).

I am a university student diagnosed with Xeroderma Pigmentosum (XP).

•4 years ago

xeroderma possibile cura

Buongiorno , ho letto di un esperimento per una possibile cura tramite farmaco per il diabete. Nessuno di voi sa qualcosa o novità in tal senso?

Buongiorno , ho letto di un esperimento per una possibile cura tramite farmaco p...

•4 years ago

Things may be changing for the better for Blue badge applications.

https://www.gov.uk/government/publications/blue-badge-disabled-parking-scheme-eligibility-consultation-summary-of-responses-and-outcome/blue-badge-consultation-

https://www.gov.uk/government/publications/blue-badge-disabled-parking-scheme-el...

Administrator•5 years ago

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Thoughts on UVR face protection

Did anyone see BBC2 'inventing the impossible' Big Life Fix ? Id be interested to know your thoughts on what they invented to protect someones face from...

Did anyone see BBC2 'inventing the impossible' Big Life Fix ? Id be interested t...

Administrator•5 years ago

can someone help know what is this ?

it's not painful but it make my eyes seem puffy and multi-colored purple yellow blue like bruised ! it's been there since 2 months .. my eyes burn and pain.. i...

it's not painful but it make my eyes seem puffy and multi-colored purple yellow ...

•5 years ago

XPD - neurological presentation

Hi all. I’m Emily my son Louis is 11 years old and has XPD, with neurological problems including hearing loss, learning difficulties etc... I’m really keen to...

Hi all. I’m Emily my son Louis is 11 years old and has XPD, with neurological pr...

EmilyRobertshaw

•5 years ago

XP: Wrap around sunglasses

Hi I hope that this information is useful to others. I managed to find an excellent pair of sunglasses for my 16year old son who has XP. It is shocking that...

Hi I hope that this information is useful to others. I managed to find an excel...

•5 years ago

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Assil XPC

Hello , My daughter Assil 3 years old , has recently diagnosed with XPC . Regards , Ibrahim

Hello , My daughter Assil 3 years old , has recently diagnosed with XPC . Rega...

•5 years ago

XP and Disability Living Allowance

Hi We are a family in West Yorkshire. My son has XP. He is now 14. We used to receive Disability Living Allowance DLA but it has now been revoked. I have read...

Hi We are a family in West Yorkshire. My son has XP. He is now 14. We used to re...

•7 years ago

PIP appeals / Tribunal

Hi there im looking for some advise on PIP appeals, I was a pip claimant and was awarded enhanced care last year, i had a new diagnosis so i contacted the dwp...

Hi there im looking for some advise on PIP appeals, I was a pip claimant and was...

•7 years ago

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Safe Adapted Accommodation in Kent

Good News - We have secured another adapted site which will be ready for use with adaptions completed by mid July. Adaptations will include Dermaguard...

Good News - We have secured another adapted site which will be ready for use wit...

TeddingtonTrust

•8 years ago

Surviving Summer - Survival Guide?

Like all parents of XP children and XP patients the world over, our thoughts are starting to turn to the difficult (near impossible for hotter region XP...

Like all parents of XP children and XP patients the world over, our thoughts are...

TeddingtonTrust

•8 years ago

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Feedback from - UK Gentic Disorders Leadership Symposium

Some useful links following attending the UK Gentic Disorders Leadership Symposium...

Some useful links following attending the UK Gentic Disorders Leadership Symposi...

TeddingtonTrust

•8 years ago

Hat

After 23 years of making James a protective hat I made one following the video on XP Family Support Group site. Adapted to a baseball cap as James doesn't...

After 23 years of making James a protective hat I made one following the video...

•8 years ago

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Lights

James went to ENT yesterday. The examination light was an above light and was very small with a magnifying glass underneath. We use a UV meter and allow James...

James went to ENT yesterday. The examination light was an above light and was v...

•8 years ago

XP In London

Hey Is there any XP people in london? If so what do you particularly like doing / found anything that particularly suits the nocturnal life here? Rich

Hey Is there any XP people in london? If so what do you particularly like do...

•8 years ago

Xeroderma pigmentosum from tunisia

Hello, i'm manel from tunisia i have 1 sister and 1 brother with XP-C i'm also member ine the association of XP here in Tunisia, i'm also a PhD student i work...

Hello, i'm manel from tunisia i have 1 sister and 1 brother with XP-C i'm also m...

•8 years ago

XP Siblings - Reading Reference.

A friend send me this link to a book written for parents to help with issues around siblings and he complex issues arising from having a special brother or...

A friend send me this link to a book written for parents to help with issues aro...

TeddingtonTrust

•9 years ago

Welcome to All

My name is Waqas and I have XP-C and im 25 years old!

My name is Waqas and I have XP-C and im 25 years old!

•9 years ago

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Welcome to all!

Hi everyone, Welcome to the launch of the Xeroderma Pigmentosum (XP) community page started by the UK National XP Service. Firstly, this community is for you...

Hi everyone, Welcome to the launch of the Xeroderma Pigmentosum (XP) community ...

Administrator•9 years ago

4 top ways to boost the visibility of your Xeroderma Pigmentosum posts

Hello everyone. I'm Hugo, Member Relations Manager at HealthUnlocked, here to share a couple of tips. When you’re starting an online movement there’s nothing...

Hello everyone. I'm Hugo, Member Relations Manager at HealthUnlocked, here to sh...

•9 years ago

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Introduce yourself to the community

We’re excited about what you can go on to do for those children and their families affected by XP (Xeroderma Pigmentosum). We hope you are too. Write something...

We’re excited about what you can go on to do for those children and their famili...

•9 years ago

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Write a post or ask a question

Welcome to all!

How do you see the XP support group helping you?

Helpful hints (6)

XP and school (3)

XP and work (2)

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