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Which advice would you give to someone who has just been diagnosed with Tuberous Sclerosis?
See some advice from people with experience in Tuberous Sclerosis to people who have just been diagnosed with Tuberous Sclerosis
Be positive. All the people is diferent when faced with this condition and keep you medical health and exams on track every 3 yeas if possible
Posted Apr 2, 2019 by Marocas 870
never stop trying to fully understand and teach as well as share any and all knowledge in the subject
Posted Jun 17, 2020 by Nick Fn Blum 2640
Translated from french
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Book an APPOINTMENT with a geneticist to review family on the STB and set a physician coordinator who will coordinate the monitoring of the different specialities required for the monitoring of the disease.
Posted Apr 7, 2017 by Guillaume 1085
Translated from spanish
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It then checks the entire body for both z outside y x inside... Ultrasounds all
Posted Sep 19, 2017 by claudia 2020
Translated from spanish
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Have faith .. it seems that it is the end but is the beginning, that you are not alone and that in any moment will come the cure. Me daughter is a doctor told me she had no way of being able to continue with life, only two doctors remain in neo gave me hope, never lower your arms even today I and I will continue looking for the cure and what's best for me baby, I've been very happy to have her with me and that disease is not going to win.. we are a team
Posted Oct 3, 2017 by PAOLA 2500
Translated from spanish
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It is good to cry, cry all you want, crying is the best for removing all the distress that you have, you will see life from another angle, to appreciate the life. Do not commit excesses, if one day you want to have a child query with some expert in genetics, remember that if you have this disease there is a 50% of passing it on to your future children and we don't want to see you suffer more by your beloved offspring.
Posted Oct 11, 2017 by RolenMan 3120
