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Old 07-09-2014, 10:21 AM   #31
johnsgrl
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Dear OP,
I truly feel for you! I will offer no judgement, nor even advice! Instead, I will offer my experience. I use an ECV or wheel chair at Disney due to stamina/mobility issues caused by an autoimmune condition. I added a medication that suppresses my immune system to the long list of other meds as a treatment just about the time the program changed to DAS from GAC. I drove my ECV to Guest Services on arrival to the park and explained the potential issues of crowded congested lines and immunosupression. With your medical background you should have no difficulty explaining your needs and how an alternate waiting area may benefit. I had no problem having a DAS issued, nor have I had any issue in having it renewed over the course of at least 5 subsequent trips.
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Old 07-09-2014, 11:49 AM   #32
JenniBugInPink
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Originally Posted by johnsgrl View Post
Dear OP,
I truly feel for you! I will offer no judgement, nor even advice! Instead, I will offer my experience. I use an ECV or wheel chair at Disney due to stamina/mobility issues caused by an autoimmune condition. I added a medication that suppresses my immune system to the long list of other meds as a treatment just about the time the program changed to DAS from GAC. I drove my ECV to Guest Services on arrival to the park and explained the potential issues of crowded congested lines and immunosupression. With your medical background you should have no difficulty explaining your needs and how an alternate waiting area may benefit. I had no problem having a DAS issued, nor have I had any issue in having it renewed over the course of at least 5 subsequent trips.
Thank you. I can't remember if I posted in this thread or not that a "biologic" medication is how we originally thought that my immune system was wiped out. The rheumatologist is now (2 wks ago) thinking that, in chicken and egg fashion, I may have had the immune issues first, and that we just found them because we checked on my IgG, etc. levels because of the medication. It's becoming more interesting by the minute. Hopefully, insurance will approve infusion of IVIG prior to my trip, so I would have immunoglobulins from hundreds of people if I can't have my own. Ask me if that freaks me out...

At any rate, thanks for the encouraging post. I wish you the best of health possible, and may your immune system rebound each and every time you get that medication!
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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 07-10-2014, 01:27 PM   #33
Piper
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JenniBug, please report back after your trip. I, too, have stage IV Kidney disease, no immune system, and rheumatological problems among other things. (The doctor gave me a list when she referred me to a neurologist. Before she gave me the list, she asked if I was depressed and I answered, "no." I told her I was going to reconsider my answer because reading the list depressed me to no end!)
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Old 07-10-2014, 01:53 PM   #34
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Piper, I was Stage V for our two trips in 12 and 13, doing PD the entire time we were there. Now that I'm post transplant, my immune system is suppressed as can be. Dealt with that for our trip in June. If I can answer any questions, let me know.
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Old 07-10-2014, 03:28 PM   #35
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Piper, I was Stage V for our two trips in 12 and 13, doing PD the entire time we were there. Now that I'm post transplant, my immune system is suppressed as can be. Dealt with that for our trip in June. If I can answer any questions, let me know.
Thank you. I am lucky. Both my primary doctor and my nephrologist are good about answering questions. My primary doctor is also good about coordinating with my 6 "specialists" and making sure what one says to do does not interfere with another one or cause additional problems.
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Old 07-10-2014, 05:09 PM   #36
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JenniBug, please report back after your trip. I, too, have stage IV Kidney disease, no immune system, and rheumatological problems among other things. (The doctor gave me a list when she referred me to a neurologist. Before she gave me the list, she asked if I was depressed and I answered, "no." I told her I was going to reconsider my answer because reading the list depressed me to no end!)
Will do! I had to laugh at the depression question, cause that's the one thing I've had since back before I had any physical ailments at all. I dealt with chronic depression back when the earth was cooling and I was just a teenager. Thanks to good meds, that part of my life remains under good control 99% of the time. Good thing, cause Jenni off her meds is not a pretty sight, LOL!
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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 07-10-2014, 08:29 PM   #37
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From what you've explained here about needing to not be in tightly packed spaces while waiting, it sounds like your needs are exactly the kind of needs that the DAS are designed for. If I was you I would definitely go to Guest Relations to discuss this need.

That being said, I have a few other suggestions to go along with that.

I know you don't like to take your ECV into queues but I would strongly urge you to stay in it for any attraction where there is any unstructured group waiting area like Monster's Inc. Laugh Floor or from what I remember of Rock'n Roller Coaster the end has a group waiting area as well. Most have a roomier area for those with mobility devices. Since you have it anyway, it seems easier to just ride in rather that try to explain at each attraction that you need to wait in that area and why. The DAS just puts you in FP+ lines. To go to the accessible waiting area at the end of the queue you have to explain each time if you don't have a mobility device and even then there's no guarantee the CM there will send you there after explaining. Staying in the ECV is just easier plus it gives you the extra buffer space around you while standing still around all those people.

Because some FP+ lines an be slow, I make a point of planning to go to those attractions when that line will be shorter. I also make a point of going to the general areas of the park that get crowded fastest at the times that are typically slowest. This is where a good touring plan service is very beneficial. I've found a good touring plan to be my best tool, even more so than a DAS. That does not mean you should not get a DAS. It means that you should employ every tool you can, a touring plan being a powerful one.

Make sure you know a list of places that are typically less crowded and take advantage of them for places to wait and/or escape to as needed.
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Old 07-10-2014, 11:43 PM   #38
ecatzippy
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We will be heading to disney this summer with lots of "borrowed" antibodies from thousands of people and I expect them to get the job done for us! FYI, if they decide you have a primary immune deficiency disease the Immune Deficiency Foundation is vey helpful. I hope your IVIG gets approved and you have a magical trip.
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Old 07-12-2014, 01:30 AM   #39
CoolDisneyCat
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To the OP -

I wanted to say hello!

I'll be there the same time as you. I have RA as well. I'll be cruising around on my scooter trying to avoid germs, too!
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Old 07-12-2014, 07:41 AM   #40
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Quote:
Originally Posted by clanmcculloch View Post
...That being said, I have a few other suggestions to go along with that. I know you don't like to take your ECV into queues but I would strongly urge you to stay in it for any attraction where there is any unstructured group waiting area like Monster's Inc. Laugh Floor or from what I remember of Rock'n Roller Coaster the end has a group waiting area as well. Most have a roomier area for those with mobility devices. Since you have it anyway, it seems easier to just ride in rather that try to explain at each attraction that you need to wait in that area and why. The DAS just puts you in FP+ lines. To go to the accessible waiting area at the end of the queue you have to explain each time if you don't have a mobility device and even then there's no guarantee the CM there will send you there after explaining. Staying in the ECV is just easier plus it gives you the extra buffer space around you while standing still around all those people...
Because of what you and others have said, and thinking about how much my ability to walk and stand have deteriorated, I'm going to plan to keep the dreaded ECV in line with me. I'm not sure I could do the lines without it now anyway.
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We will be heading to disney this summer with lots of "borrowed" antibodies from thousands of people and I expect them to get the job done for us! FYI, if they decide you have a primary immune deficiency disease the Immune Deficiency Foundation is vey helpful. I hope your IVIG gets approved and you have a magical trip.
Still waiting for the insurance company decision. I hope you have a great trip, too. And thanks for telling me about your 'borrowed' antibodies. The more I hear about actual real live people getting IVIG, the less I worry about side effects. I think it's a case of knowing a little too much for my own good. When you work in Pharma research, you tend to get really paranoid about adverse effects.
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To the OP -
I wanted to say hello!
I'll be there the same time as you. I have RA as well. I'll be cruising around on my scooter trying to avoid germs, too!
Cool!hope you have a great healthy trip!
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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 07-12-2014, 03:56 PM   #41
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We just returned from a 17 day trip and I wanted to offer some advice. Get to the parks early!! We did this and the crowds we very low in the mornings. We were able to walk on most attractions, we used FP+, and only used the DAS a few times. I will warn you though, the FP lines are longer and a bit slower than before FP+. I hope this helps. Have a great trip
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Old 07-15-2014, 03:21 PM   #42
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I completely agree that this is just hearsay and that Disney in fact takes every issues and hears what the clients are saying and requesting.
In cases where they haven't with me, I don't post that in an attempt to discourage people from going, or discourage them from asking for accommodation.

I had done a lot of research before my first trip as an adult with disabilities (I was fairly healthy when I went as a kid, and there were a number of years in between), and after my research I was expecting to breeze in and have no problems whatsoever. That made it doubly frustrating when I went and encountered CM's with terrible, unhelpful attitudes who seemed determined to make me choose between spending the majority of my vacation either doing what little I could without accommodations or standing around and arguing with them all day.

They weren't the majority, of course, not by any means, but there were certainly enough of them that I ended up wishing someone had forewarned me about the possibility of encountering them, and about how much power they can wield unless you have the time and fortitude to advocate for yourself and be willing to demand supervisors as far up the line as it takes instead of just going and doing something else.

So, when I bring up something negative that happened to me regarding disability at WDW, it's because I either want to learn what other people might have done to keep it from happening to them, or to make sure others know that it's a possibility so they can watch out and either prevent it or figure out ahead of time how they're going to deal with it if it chances to happen to them, too.
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Old 07-16-2014, 04:56 AM   #43
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In cases where they haven't with me, I don't post that in an attempt to discourage people from going, or discourage them from asking for accommodation.

I had done a lot of research before my first trip as an adult with disabilities (I was fairly healthy when I went as a kid, and there were a number of years in between), and after my research I was expecting to breeze in and have no problems whatsoever. That made it doubly frustrating when I went and encountered CM's with terrible, unhelpful attitudes who seemed determined to make me choose between spending the majority of my vacation either doing what little I could without accommodations or standing around and arguing with them all day.

They weren't the majority, of course, not by any means, but there were certainly enough of them that I ended up wishing someone had forewarned me about the possibility of encountering them, and about how much power they can wield unless you have the time and fortitude to advocate for yourself and be willing to demand supervisors as far up the line as it takes instead of just going and doing something else.

So, when I bring up something negative that happened to me regarding disability at WDW, it's because I either want to learn what other people might have done to keep it from happening to them, or to make sure others know that it's a possibility so they can watch out and either prevent it or figure out ahead of time how they're going to deal with it if it chances to happen to them, too.
Sorry - I didn't mean that the CM's never get it wrong or are never rude - It sounds like they weren't very good to deal with in your case.

I was trying to put across the point that a lot of what is said on here about "you will or won't" get a das for certain situations esp wrt to immuno and neuro disorders is speculation and that it appears some on here are in fact trying to put others off/dictate who should or should not ask for one. When in fact not everyone with the same disorder has the same needs so it's up to them to decide what they need to ask for to get a das.

I have got fed up with comments including some telling others that they shouldn't even go to disney - Sorry again if it came across wrong and that it was inferring that all of what is said about rude CM is false as that's not what I meant
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Old 07-16-2014, 08:17 PM   #44
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My 1.5 year old has Severe Congenital Neutropenia. While she is immunodeficient she is technically making neutrophils because of her daily shot and theoretically could fight off some bacteria and germs. We are going in December as a last hurrah for her and our 4 year old before a spring bone marrow transplant.

I plan on requesting a DAS, though I've had some of the same thoughts- It's impossible to avoid crowds and germs at WDW, so am I crazy for even going? But ultimately, we are trying to make the best of a situation and will take as many preventative measures, including masks, hand washing, gel, strollers, etc as we can.

If they refuse we will be fine, and if they don't refuse then we can avoid at least a few hours of people breathing on my child.

Good luck!
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Old 07-17-2014, 07:40 AM   #45
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My 1.5 year old has Severe Congenital Neutropenia. While she is immunodeficient she is technically making neutrophils because of her daily shot and theoretically could fight off some bacteria and germs. We are going in December as a last hurrah for her and our 4 year old before a spring bone marrow transplant.

I plan on requesting a DAS, though I've had some of the same thoughts- It's impossible to avoid crowds and germs at WDW, so am I crazy for even going? But ultimately, we are trying to make the best of a situation and will take as many preventative measures, including masks, hand washing, gel, strollers, etc as we can.

If they refuse we will be fine, and if they don't refuse then we can avoid at least a few hours of people breathing on my child.

Good luck!
Hello, other Jenny! I hope you have a great, germ-free holiday trip when you go in December and that you get the DAS without difficulty. I agree that you can't avoid all the 'bugs', but reducing exposure as much as is possible can never be a bad thing. Even after I start IVIG, I still won't have any IgA or IgM, so my immune system will be better, but not normal by any standard.

What I wish for you all most of all is that the bone marrow transplant goes superbly!! I'd really like to know how she does when the time comes.
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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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