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Adults With Familial Dysautonomia

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I am looking for some guidance please

I have a daughter in her early twenties with learning diffiuclties. She has made friends with a young man in his late 20's with FD. From what I have heard he has the condition in a relative mild form. He has to use artificial tears, has a tube that gives him liquid at night. He holds down a responsible job.

It could be in the future they may wish to get married, as a mom who knows very little about this condition other than what I have read on line, is there a way I can be guided as to questions I could be asking with regard to how his condition might develop or perhaps worsen as he gets older. Or other answers we should be seeking.

Apologies if this sounds like an ignorant/uncaring post I just want to be sure we can be fully informed or if perhaps a long term relationship may not be feasible between him and my daughter.

Many thanks.


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Hi Abby,

Welcome to the forum and for asking your question. The type of dysautonomia you are asking about is a genetic form. Most of the information and members here at DINET suffer from other types of autonomic dysfunction that can be caused by many different things.

The best resource for the genetic form you are asking about can be found here: http://www.familialdysautonomia.org/

As it sounds like this young man has a mild form of it, it may be possible for him to have a very normal life. There is genetic testing available if having children would be a consideration. I think that most of your questions can be answered by the organization I posted above.

As someone who has an autoimmune cause of my dysautonomia and who has to live with my illness every day for the rest of my life, I can attest to the fact that you can still live a very full and happy life. Often those who have medical challenges in their lives are able to offer more compassion and empathy to others then someone who has never had to struggle with health issues. We are not our illness, it just part of who we are. We just have to go about things and manage our lives and illness in a different way than a fully healthy person. What helps us the most is family and friends that support and understand the way we have to manage our lives. That we have challenges when often we don't look sick at all. Some of us are open when we are struggling and ask for help, more often we keep it to ourselves and don't ask for help. If family is attentive then they will learn when to step in and help and when to back off.

With everything in life often our challenges have silver linings and allow us to grow into better people because of them. They make us who we are, and if someone falls in love with us, that evolved person is who they love. What a gift.

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One thing I will add from my own experience of having health problems and raising children with them, too, is that it really can, with the right influences, encourage compassion and empathy, and that would not be a bad thing to have in a future son-in-law. I think if I had always been healthy and confident in my physical body or if my kids had been perfect I may very well have wound up a superficial, self-centered, prideful, judgmental person. Not that other people would be like that, but I'm talking about ME. A little suffering has done a lot to bring me out of myself to understand and love others better. I also feel like I have had the most support from people who have also had their own struggles.

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