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Living with Tuberous Sclerosis. How to live with Tuberous Sclerosis?
Living with Tuberous Sclerosis: how patients cope day to day and stay positive - real experiences and practical tips.
just like everyone else, one foot in front of the either and the chin up, an smile on
Posted Jun 17, 2020 by Nick Fn Blum 2640
Translated from french
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The consequences are very variable from one person to another, in function of its harm, the importance of iq deficits and/or behavioral disorders.
Some children do not present special events and require a follow-up of security. They will develop communication skills and self-reliance that will enable them to adulthood, to be independent and have a job.
For children with more severe forms of the disease, the support can be significant and have consequences on the everyday life, especially in cases of uncontrolled epilepsy, intellectual disability or autism spectrum disorder, which diminish the autonomy of the person.
Sometimes the impacts are not related to the handicap, but to the constraints related to the support. The time schedule of taking medications, consultations, medical and paramedical challenge and question of the project outputs or activities, which may be difficult to accept for the other members of the family. The monitoring and ongoing care that must be provided for children with also have an impact on the professional life of the parents (absenteeism, leave, childcare, part-time work, etc.).
The impact may also be related to harm in any way less serious on the medical plan, but difficult to accept, such as the aesthetic damage caused skin disorders in adolescents.
The best to be happy or at least live well with the disease without too much undergo is to be informed at best (follow-up, symptoms, ...) for not to be unprepared in the case of evolution and to stay positive, enjoy the small moments of positive change.
Some children do not present special events and require a follow-up of security. They will develop communication skills and self-reliance that will enable them to adulthood, to be independent and have a job.
For children with more severe forms of the disease, the support can be significant and have consequences on the everyday life, especially in cases of uncontrolled epilepsy, intellectual disability or autism spectrum disorder, which diminish the autonomy of the person.
Sometimes the impacts are not related to the handicap, but to the constraints related to the support. The time schedule of taking medications, consultations, medical and paramedical challenge and question of the project outputs or activities, which may be difficult to accept for the other members of the family. The monitoring and ongoing care that must be provided for children with also have an impact on the professional life of the parents (absenteeism, leave, childcare, part-time work, etc.).
The impact may also be related to harm in any way less serious on the medical plan, but difficult to accept, such as the aesthetic damage caused skin disorders in adolescents.
The best to be happy or at least live well with the disease without too much undergo is to be informed at best (follow-up, symptoms, ...) for not to be unprepared in the case of evolution and to stay positive, enjoy the small moments of positive change.
Posted Apr 7, 2017 by Guillaume 1085
Translated from spanish
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I think that nobody in the world can live happily with a disease...but you must try to learn to live with the disease and be happy despite the difficulties
Posted Sep 19, 2017 by claudia 2020
Translated from spanish
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If of course you can.. on the contrary feel pity, a person who carries this disease and will making things like talk, walk, study, have many reasons to be happy, once you diagnóstican centers to see the day-to-day with more value and what you live knowing that today Luchaste and you won .. thing that others do not value it as much to be healthy
Posted Oct 3, 2017 by PAOLA 2500
Translated from spanish
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If you can live and be very happy, at the beginning, when you hear is very very painful, but remember that you are not alone, you have your family, you have God (if you believe in God). Love with all your heart to your loved one appreciate life. Other people are healthy and take drugs, smoke, get drunk, and do not appreciate that gift so cute that we gave them, to be born with good health
Posted Oct 11, 2017 by RolenMan 3120
Translated from spanish
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If it is possible to be happy and work hard to find the best way to continue moving forward, my son has tuberous sclerosis and even dream of the day that develop a drug that will give them a better quality of life , without headaches, without suffering.
Posted Oct 17, 2017 by Felipe 150
