Xeroderma pigmentosum from tunisia

[Manel]

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 in a genetic laboratory intrested in Xeroderma pigmentosum and genetic investigation. by signing in HeathUnlocked i'm so happy to share with you my experience with my family. And i'm available for any questions

[James-XPD]

Hi Manel. I am the Mother of James who is 25years old. He has XPD and many neurological problems. What are your lab investigating?

[Manel in reply to James-XPD]

Hello Madame,

I'm working in the Lab' Laboratory of Biomedical genetics and oncogenetic "in pasteur Institute of Tunis. I'hope that the health of your boy is fine.

Thank's very much

[emmzzinlondon]

Salam, manel. My name is mohamed. I live in london most of my life. My parents are from yemen. I have xp c. I am interested in finding out more about xp from a biomedical/molecular genetics. Is there any books worth reading that you can advise?.

[Manel in reply to emmzzinlondon]

Hello Mohamed,

I hope firstly that you are fine. Leave your email i can send to you many article and books for XP and researches.

[Adamrimel in reply to emmzzinlondon]

Salam mohamed can you tell mewhere can i buy the anti uv windows film and anti uv glass for a child

[emmzzinlondon]

thanks manel, thank you. yes I'm well but under continual care. My email address is [e-mail]. I would very muh appreciate any journals/ literature that you have come across related to the XP medical condition.

Many thanks

[Adamrimel]

Hi manel. My name is rimel i live in London am originally from Algeria my sister found this week that her son Adam 2 years and half got xp disease and we don't know what to do i would like to ask if they can diagnose this disease without doing any test .she's planing to come to Tunis as soon as possible to double check ..can you advise me where can she go and what she has to do

thanks sister

[Manel in reply to Adamrimel]

Hi rimel you are welcome to tunisia you have just contact the right person because im doing genetic tests for xp since 4 years so when you come to tunisia you must visit our laboratory in pasteur institute of tunis and we wilk talke to you in every thing about the disease. But as i know there is a laboratory in algeria who works now on xp i will asking for this but we can also do the test for you in tunisia. The doctors can tell you after clinical diagnosis that if hr is xp or not but genetic test is the only test which confrim that. for mote details you can mail me to: [e-mail]

[Adamrimel]

Thanks a lot dear my sister is preparing all the papers to come there maybe in 2 weeks time ..We are trying to find the anti uv windows film and the special machine to check the lamp light we didn't find nothing in Algeria do you have that in Tunisia. .

sorry if am asking too many questions but it's very hard for us to accept this disease at the moment specially that we never heard about it

thanks for your help

[Manel]

Hi, yes in our support group directedby a dermatologist dr zghal mohamed we have all the anti uv clothes, glasses, windows film. when you come to tunisia we can discusss all about the disease and contact me before coming by email ok

[Adamrimel]

Hi man el. I sent you an email this afternoon can you just confirm that you receive it plus

thanks

[Manel in reply to Adamrimel]

hi sorry i don't receive any thing my email is: [e-mail] or

[e-mail]