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Old 06-19-2013, 02:56 PM   #16
Anri
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First off, I truly feel for you and your son. The most important thing is for him to know that you fully support him and are not afraid of other people's opinions.

My now ex-fiance had a rare mutation of epilepsy. He didn't have full on seizures but his body or voice box would seize periodically. So we would be somewhere and he would seize up and make almost like a clicking noise if he had been trying to say something when he had an attack. If he was holding something, it would go flying across the room. If he was hugging me or holding my hand, I'd get pushed. People used to look at him like he was being weird on purpose and he always felt the need to explain himself. I used to explain to family and friends beforehand, not because I was embarassed by him (because I most definitely was not) or because I cared what they thought, but because I didn't want people to bring it up or say something insensitive towards him without knowing.
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Old 06-19-2013, 03:11 PM   #17
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Originally Posted by anelson81993 View Post
I have three congenital heart defects, so I am totally with you. I think heart conditions and defects are one of the most ignored health problems in kids and teens (even though 1 in 100 American babies are born with them!) and my heart breaks every time I read a story like yours.
Sadly not everyone knows more kids died because of heart defects every year then of cancer I have a heart baby.. she is 12 and doesn't look "sick" or different until she talks.. then you can tell there is something "off".



http://www.childrensheartfoundation....hf/fact-sheets
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Old 06-19-2013, 07:48 PM   #18
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OP here, we had to go out of town unexpectedly so I'm just now reading everyone's responses. It's amazing how many people are going through something similar as my son. I'll be replying more as soon as I get a minute!
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Old 06-19-2013, 08:21 PM   #19
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My wife , who is now 32.( she'll kill me if she knows I told you guys her age!) has a form of MD that is not real noticeable unless you are around her for awhile. She can walk but not long distances and she gets tiered quick. Her hands shake sometimes and her feet turn in when tiered. But unless you really look she seems normal. When she uses her handicap tag on her jeep she gets some bad looks from people like she is using someone else's tag. She gets a bit upset and tries to explain to people too but most don't seem to believe her. I know it's not easy for him but he just needs to worry about his health and not everyone else. Who knows he may do great things in his life and when he does , he can explain that to them! Wish him well , good luck!
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Old 07-14-2013, 04:04 AM   #20
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Originally Posted by chiefmickeymouse View Post
After years of trying to discover the root of our son's physical problems, DS16 has been diagnosed with a genetic disorder that effects his connective tissue and heart. He is quite limited physically and has a heart condition that keeps him from being able to do most active things. While it was difficult getting used to the diagnosis (and I admit, a little bit of a relief to at least know what is wrong), I have found a large part of the problem is that he looks like he is perfectly healthy.
He feels like he has to explain himself and his disorder to anybody who asks him if he "plays sports". I can just imagine the dirty looks if we go back to Disney and use a wheel chair! Anyone been there, or there now? I would especially like to hear from young people or parents of young people who have been living with invisible disabilities.
I have Ehlers Danlos Syndrome Type 3 (Hypermobility Type) - and if I had to guess (you certainly do not have to disclose a diagnosis online) I would say your son has either Marfans or EDS4 (Vascular Type).

I totally understand the lengthy diagnosis process. I was actually diagnosed as depressed more often than not (have that too, but that generally does not cause dislocated shoulders and sprained ankles).

I was not diagnosed until I was 23, but I understand being sick when a teenager and not having people "get it." I kept wanting to explain what was wrong with me to everyone, since I assumed that everyone around me was wondering why the young woman had a cane (I now use a wheelchair full time due to the joint problems).

Anyway, I have been in Disney in a rental chair, in my own wheelchair, in a powerchair, etc. The important thing for your son to remember is this: It is YOUR vacation and YOUR life. If I am right about the dx, overdoing it because of fear of dirty looks or whatever could be fatal, or at least painful.

Occasionally I encounter a stupid or rude person who looks at me (in my custom made $5000 wheelchair which is clearly not an everyday chair) and says something dumb like "you are too young/pretty to need that!" or "you don't look sick!"

I figure I am a much better person, because clearly they have very little in their lives if this is what they spend their time doing.

About Disney World - almost all lines are mainstreamed, so even if you have a wheelchair, you will be doing what everyone else does. So that is not a big deal. Also, if you are concerned about people saying something, come up with two responses - one for nosy but generally polite people, and one for rude people. My first suggestion is to ignore them entirely. Just pretend they do not exist.

If you cannot do this, as sometimes they will either keep asking or you are just fed up (happens to the best of us), have a quick answer ready that does not invite further conversation.

For the first, the nosy but generally polite, in your case, I would just say "heart problem." Don't even give them a full sentence. You can also say "I do not discuss my personal health matters with strangers."

For rude people, REALLY try to ignore them. If you can't, just say "He/I have a heart defect that can kill me if I strain myself" then turn away.

Do not be rude, but I found I was calmer when I had a short quick answer - I just say to people "genetic problem - bad joints" and that is it. Then I turn away, and they stop talking to me.

I am 28 years old and a moderator on the disABILITIES board. I heartily encourage you and your son (depending on age) to come check us out. This is a question we get all the time, and we have built a lovely little community over there. Trust me, there are a ton of us in your family's position, and we are here to support you (there is also a community board there, where you can vent, talking about non-Disney things, etc). We all get medical terminology, we understand the stresses it puts on a family besides medical health, etc.
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Old 07-14-2013, 06:36 AM   #21
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Don't ever worry about what other people think. Eventually, it'll just become second nature for him. I rarely use a Guest Assistance Pass because personally I feel I don't need it, but those people don't know you. They aren't part of you group, they don't need to know why you're in that line. It isn't their business. I have sensory problems and a fear of heights and I'm claustrophobic, so sometimes I'll wear earplugs or headphones when I'm out. They look a little weird, and I've gotten strange looks, but all that matters to me is that I'm ok. That's all you need to worry about. You focus on your son and nobody else.
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Old 07-14-2013, 06:38 AM   #22
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My friend got so sick of it, her son wears a sticker describing his most dangerous non visible symptom.(he has very low vision) so while itlooks like he is just wearing glasses, he really can't see much at all. They live in NYC and he travels alone. It was simpliest way for her to have people back off.
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Old 07-14-2013, 02:14 PM   #23
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I hope you have a wonderful time with your family. This thread is a great reminder for us all.

Ana
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Old 07-14-2013, 02:31 PM   #24
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Sorry you and your ds are dealing with this.

As Katie posted just wondering if he has Marfans or ED. If he has Marfans there is a wonderful national network. Great support and info. They have a yearly convention where he could be with other teens too etc.

My sis had Marfans and she looked pretty healthy from the outside. I also have and had a miriad of problems growing up as a teen too. Bad genes run in my family.

Its hard that he has to find a new normal etc. I dont know what they told your ds, is it no sports or low sports etc. I know my sis and even my one ds bowled.

There are other things he can do and enjoy that are not strenuous, maybe fishing etc.

Its a journey and just take it one day at a time.

Wishing your ds and your family all the best.
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