脆性X染色体综合征患者的生活。如何与脆性X染色体综合征共存?

脆性X染色体综合征患者是否可以过正常的生活?脆性X染色体综合征患者应该如何保持乐观?脆性X染色体综合征可能会影响您的日常生活,但您必须保持乐观。看看其他病患如何抱着乐观的态度与脆性X染色体综合征共存

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I believe you can be happy living with FX, but you must be able to accept how it affects you and then seek out the help needed to allow you to function to the best of your ability.It is not an easy disorder to accept due to the hereditary component which often creates guilt and shame.Because the majority of affected indiviuduals have some level of cognitive impairment and communication difficulties it can be hard to know if they are happy from their own observations. But in general I feel like persons with FX present as happy and loving, sweet individuals. It is up to the parents of FX individulas to do whatever is possible to help their children have a happy life.My philosophy has been to give my children( who are now adults) as much control over their own lives as possible, honor their choices and to understand that just because they may not have the life that you expected that is not a bad thing. Having a sense of humor, some type of support group, an open mind will help immensley.

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