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Old 06-18-2014, 07:14 PM   #1
JenniBugInPink
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Immune Disorder - DAS?

I've been going to WDW 3 times in the last ~8 years or so, always using an ECV (after trying not to on that first trip and failing, LOL). I have multiple issues I deal with, but for our upcoming trip in September I have a new one. I am now immunocompromised. I have essentially no immunoglobulins (like IgG, which you may or may not have heard of). I have rheumatoid arthritis, and the medication I received to treat it a year and a half ago wiped out my immunoglobulins. Normally they rebound fairly quickly, but mine never did and apparently aren't ever going to. So, I have to act kind of like your average transplant or cancer patient as far as avoiding potential infection goes.

I need to avoid crowds of people where possible. I wear gloves a lot and a mask when I have to (as much to remind myself not to touch my face with contaminated hands as anything else, because the mask will NOT completely block aerosolized virus or bacteria from entering.) I can't touch things like door handles, railings, etc. without going through immediate decontamination procedures, and I should own stock in antibacterial wipes.

I never used the GAC, but it appears I will need to try and get a DAS. It would be nice if I could wait for rides away from the huddled masses. I don't mind the wait, as I've always just parked the ECV and gone through the regular line before on foot. I just am a little afraid of all those people now!

Getting sick is a really scary proposition for me. A cold could kill me, you know? At home, I almost never leave the house. I almost chickened out on our trip, but if it kills me, so be it. I'd rather die due to a Disney trip than live staying home all the time. I'm in Stage III/IV kidney failure, so my kidneys will take me out one day anyway. It's been three years and I miss WDW!

What do you think my chances are for the DAS?
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I have an immunodeficiency disorder, and Sjogren's Syndrome w/ rheumatoid arthritis pain, anemia, and Stage III/IV kidney failure.
I look perfectly healthy, but I MUST use a scooter/ECV. I won't run into you unless you complain about it.
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Old 06-18-2014, 07:24 PM   #2
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I honestly, feel like it could go either way. It'd probably just be if the CM thinks it's possible to avoid germs/etc easier outside the lines.

My first thought reading it all was that even with a DAS there's just no way to avoid crowds. There's really nothing in a line that isn't anywhere else you'd be waiting, and I'd actually think you'd be fine in the line since you could stay on your EVC and not touch anything. If you'd just be kind of sitting on an EVC not touching things outside the line, I think you could do the same thing inside it. Especially since you'd still be in a 15 or so minute line with the DAS.

I remember someone posting about wanting a DAS for almost the same reason for their child. It was quite awhile ago and I can't recall if they ever posted the outcome though.
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Old 06-18-2014, 07:34 PM   #3
sookie
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Maybe a vacation such as Disney isn't suitable for you. I'm sorry.

The only thing I can think of is:

-Consider going during a low(er) season.
-Don't even think of going during flu / cough / cold season. That means at least October - February (or longer). That will kick out some of the low season options for you.
-Keep up on all vaccines.
-Continue to use your mask and gloves.
-Take all your meds.
-Talk to your doctor about your planned trip. He or she may have additional advice for you about going to a crowded theme park.

Sorry for the bad news. Do you really want to risk it if your immune system is as bad as you indicate it is?
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Old 06-18-2014, 07:54 PM   #4
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If you haven't already done so, check out the DAS sticky; it's got a lot of good info in it. A lot of people have reported that cms see the ECV, tune you out, and say the ECV is all you need. If you think that the DAS will help you, be prepared to explain why your needs are not meet by just the ECV. I had a "fun" time trying to explain that a wheelchair/ECV did not meet my needs (I'm boarder-line arthritic). Don't mention stamina at all. You should probably mention that it's a danger to your health to be packed in with group of people for a long period of time and that you need a safe place to reduce the amount of time you spend in a slow moving mass of humanity.

I wear a mask on a regular basis for airborne allergies and would recommend anyone immunocompromised to wear one as well. WDW is a germy place all over. When's your trip? You'll want a lighter mask in warmer months as you will end up with your own ecosystem if it doesn't breathe enough.

I completely understand being scared to leave the house for medical reasons. The reason I wear a mask regularly is because I have severe airborne allergies to tapioca, mustard, and ethyl alcohol. This means I am allergic to the smell of hot dogs, french fries, and hand sanitizer. I can't get near a McDonalds bag without a mask. (There's a mask in my bag right now.) Sometimes you just have to take a chance and live your life with fear on the back burner. Don't let it get you down. Feel free to PM me if you ever just need to talk/vent.
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Old 06-19-2014, 05:08 AM   #5
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when are you going? I will be there in Aug and have similar issues so I can get back to you by on my return

Best not to discuss this on here as most seem to suggest that the das is now for spectrum issues only.

I asked a similar question a while back only to mostly have the reply that I shouldn't go - A decision I have allowed my doctors to make not members of a forum. I did get several PM's from people (who are fed up with the attitude of some on here to non spectrum problems so now won't post but PM insead) who have similar problems who will get back to me once they travel in July. I will also let you know what happened with them.
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Old 06-19-2014, 09:42 AM   #6
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Quote:
Originally Posted by mackay_j View Post

Best not to discuss this on here as most seem to suggest that the das is now for spectrum issues only.

.
Misconception. that being said the fact is the new DAS is more restrictive and is no longer an option for people who were able to utilize the old GAC due to the evolvement of it into a FP by default

Last time I went, I was sent to wait in the HA section for one ride or another. following the CM instruction DH and I made our way to the painted off section next to another family( 2 A 2 K.) whereby I was immediately SCREAMED at by the women to 'stay away form my kid! he cannot be near germs!!!!" the CM told the woman that I HAD to be there as all sections had to be used and sorry but he could not leave it empty. she went off on him too and started screaming( yes her voice was raised) that her husband was also at risk. and just kept going on.
the kid was not in a mask, or had any other precautions( I too am immunocompromised but not as badly as you and all my needs are met by my wheelchair)

It took everything I had to not point out that she and her family was SURROUNDED by germs, some of which came from areas of the country( and world for that matter) that her family had never been exposed to or had any hope of fighting off.

if your doctor says it's not a good idea, then don't go.
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Old 06-19-2014, 12:42 PM   #7
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Quote:
Originally Posted by mackay_j View Post
when are you going? I will be there in Aug and have similar issues so I can get back to you by on my return Best not to discuss this on here as most seem to suggest that the das is now for spectrum issues only. I asked a similar question a while back only to mostly have the reply that I shouldn't go - A decision I have allowed my doctors to make not members of a forum. I did get several PM's from people (who are fed up with the attitude of some on here to non spectrum problems so now won't post but PM insead) who have similar problems who will get back to me once they travel in July. I will also let you know what happened with them.
Completely bogus. There are plenty of people dealing with non spectrum disabilities who obtain and utilize a DAS. It's issued for reasons prohibiting people from waiting in a standard line - that's it. Autism happens to be a large portion of people that fall into that category. I have never seen a single soul on this forum post or say that the DAS is only for the autistic, and most get pretty angry when someone posts a CM states it directly.

It's not issued if there are other means of accommodating someone (whether they like it or not). It's far better to go in with a reasonable expectation and a back up plan since everyone that wants a DAS doesn't receive one.
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Old 06-19-2014, 01:38 PM   #8
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Quote:
Originally Posted by aaarcher86 View Post
Completely bogus. There are plenty of people dealing with non spectrum disabilities who obtain and utilize a DAS. It's issued for reasons prohibiting people from waiting in a standard line - that's it. Autism happens to be a large portion of people that fall into that category. I have never seen a single soul on this forum post or say that the DAS is only for the autistic, and most get pretty angry when someone posts a CM states it directly.

It's not issued if there are other means of accommodating someone (whether they like it or not). It's far better to go in with a reasonable expectation and a back up plan since everyone that wants a DAS doesn't receive one.
I've read both here and on other forums that CMs have told guests that the DAS is for autism. They were wrong but if you come up against one of these CMs, you're out of luck.
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Old 06-19-2014, 01:51 PM   #9
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Originally Posted by Disneychick75 View Post
I've read both here and on other forums that CMs have told guests that the DAS is for autism. They were wrong but if you come up against one of these CMs, you're out of luck.
that is when you politely but firmly request to speak to their supervisor.
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Old 06-19-2014, 09:08 PM   #10
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Many of the lines now work with ECV and like little ones in a stroller I think you probably get better protection being on the ECV not at face level so much and people tend to leave space around an ECV too so they don't get run over. Without the ECV in sight its probably a toss up on the DAS. I have a different medical condition but also one where I can be physically harmed by others touching, pushing, etc and I have no troubles getting a DAS when I need one BUT I 99% of the time go on the slowest park days because its not just the masses in line but also the masses everywhere that are an issue and I only get/use DAS for very specific conditions otherwise I can do fine with rides as long as I'm with 2 others who can run interference for me standing in front and behind me. I totally understand you wanting to go and the DR OKs it but I would take every precaution like gloves and mask. We haven't gotten sick on any of our many trips but we tend to not get sick often. We have had issues though on nearly every trip where one of us sits in something on a ride that I would consider a bio-hazard, people cough/sneeze on us, can't help but touch some grab bars, etc. Can you do public restrooms? Those auto-flushers are so strong they always send out a yucky mist.... When my brother was on chemo he was not supposed to go in any restroom with an autoflush and had a whole page of rules from the Dr about people using toilets in his house like closing the lid and flushing solid waste multiple times, etc. I would worry potentially more about things like that than the lines.
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Old 06-19-2014, 09:26 AM   #11
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Quote:
Originally Posted by Random Ninja View Post
If you haven't already done so, check out the GAC sticky; it's got a lot of good info in it. A lot of people have reported that cms see the ECV, tune you out, and say the ECV is all you need. If you think that the DAS will help you, be prepared to explain why your needs are not meet by just the ECV. I had a "fun" time trying to explain that a wheelchair/ECV did not meet my needs (I'm boarder-line arthritic). Don't mention stamina at all. You should probably mention that it's a danger to your health to be packed in with group of people for a long period of time and that you need a safe place to reduce the amount of time you spend in a slow moving mass of humanity.

I wear a mask on a regular basis for airborne allergies and would recommend anyone immunocompromised to wear one as well. WDW is a germy place all over. When's your trip? You'll want a lighter mask in warmer months as you will end up with your own ecosystem if it doesn't breathe enough.

I completely understand being scared to leave the house for medical reasons. The reason I wear a mask regularly is because I have severe airborne allergies to tapioca, mustard, and ethyl alcohol. This means I am allergic to the smell of hot dogs, french fries, and hand sanitizer. I can't get near a McDonalds bag without a mask. (There's a mask in my bag right now.) Sometimes you just have to take a chance and live your life with fear on the back burner. Don't let it get you down. Feel free to PM me if you ever just need to talk/vent.
This is correct. If the CMs at GR see you on a ECV then they WILL tune out all other reasons you need a GAC. This happened to us twice. My DH uses a ECV but his need for a GAC is not mobility related. When the CMs saw the ECV they quickly denied him. Just go to GR without the ECV and the process will go smoother. Have a great trip.
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Old 06-19-2014, 07:27 PM   #12
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I definitely don't think you shouldn't request a DAS, but I DO think it could be a toss up. It's just not something I've seen as the only reason someone is requesting the DAS so there's no history to go off of (that I've read anyway).

We will be there at the same time though, so if I see a pink EVC I'll give you a wave
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Old 06-19-2014, 07:49 PM   #13
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Just to clarify a bit- as I understand it, under the DAS, there are no specified alternate waiting areas as once existed under GAC. If you have a DAS card, you are free to wait in a place of your own choosing. That's not quite the same thing, in terms of separation from crowds (I'm thinking about places around Soaring/The Land, for example, that are not crowded). That elevator area has to be one of the biggest (indoor) human traffic jams @ Disney!
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Old 06-20-2014, 01:35 AM   #14
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I don't know what the answer is for your trip. However, I just wanted to put it out there that we work with a clinical immunologist for weekly IGG replacement for an immune disorder and it has been life changing for our family and many others. Hopefully they can give you a weekly or monthly IGG boost so things are a bit easier. It has made it a lot easier for us to go to Disney!

Last edited by ecatzippy; 06-20-2014 at 01:40 AM.
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Old 06-20-2014, 06:56 AM   #15
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Quote:
Originally Posted by ecatzippy View Post
I don't know what the answer is for your trip. However, I just wanted to put it out there that we work with a clinical immunologist for weekly IGG replacement for an immune disorder and it has been life changing for our family and many others. Hopefully they can give you a weekly or monthly IGG boost so things are a bit easier. It has made it a lot easier for us to go to Disney!
The Rheumatologist and I have discussed starting IgG, but I've been a little hesitant because of all the side effects I've read about. It sounds like it's gone well for you. I'm on so many meds, I've just gotten skiddish I guess. Since my kidneys crapped out, I'm not on nearly as many as I once was, LOL. I see the Rheumy in about 10 days, so I'm sure we'll discuss it again.

Thanks for the reassurance!
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I have an immunodeficiency disorder, and Sjogren's Syndrome w/ rheumatoid arthritis pain, anemia, and Stage III/IV kidney failure.
I look perfectly healthy, but I MUST use a scooter/ECV. I won't run into you unless you complain about it.
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