Immune Disorder - DAS?

[Jonell]

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

 

[ttintagel]

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.

 

[mackay_j]

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

 

[jennygirlmt]

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!

 

[JenniBugInPink]

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.

 

[SashaFarce]

I have some immune system issues as well - nothing anywhere near like the OP and other people are experiencing, but I don't have the ability to fight off serious infections due to cirrhosis.

I would not dream of huddling up in the house and stopping traveling because I might get sick. What kind of life would THAT be? I sanitize by the bucket, use my ECV, and I also have a DAS (for unrelated issues). Initially I got sick every time I came back from Disney but now that we know and understand about my illness I don't have this issue. Since my issue is much more minor than others', this works for me, but I obviously know that this doesn't work for everyone with more severe illnesses.

I did not request my DAS with ECV. I felt that was the most likely way of me getting it, and I limited my explanation to my illnesses that cause me the most short term problems (in my case, my bladder).

 

[JenniBugInPink]

I thought I had already posted this, but I don't see it anywhere so..
I just wanted to add a quick note that I get my first IVIG (intravenous immunoglobulin) infusion tomorrow morning. Thank you so much to you folks who have been so supportive! I wish I could take you all with me in the morning (especially your kids who've been through this and are all so brave!!) to hold my hand, as I am still feeling a little like a big ole' baby and am a tad nervous. It's not like me - I'm a very stalwart, independant soul. Heck, I kill snakes for my husband and our neighbor! (We live in the country, so there's at least 1 - 2 every summer that threaten our little ponds/frogs/fish and refuse to be relocated.) I have no fear, except for this. Spiders, needles, blood/gore, major crises, you name it, I'm good. A silly infusion of a blood product, I'm wigged out. It's ridiculous. But off I go, regardless, with dreams of Disney and visions of all the brave kids (and adults) who've gone before me dancing in my head. Gajillions of people go through this all the time, right? I'll be fine, I'm sure. Can you tell I'm talking to me, not ya'll?

 

[StitchesGr8Fan]

I thought I had already posted this, but I don't see it anywhere so.. I just wanted to add a quick note that I get my first IVIG (intravenous immunoglobulin) infusion tomorrow morning. Thank you so much to you folks who have been so supportive! I wish I could take you all with me in the morning (especially your kids who've been through this and are all so brave!!) to hold my hand, as I am still feeling a little like a big ole' baby and am a tad nervous. It's not like me - I'm a very stalwart, independant soul. Heck, I kill snakes for my husband and our neighbor! (We live in the country, so there's at least 1 - 2 every summer that threaten our little ponds/frogs/fish and refuse to be relocated.) I have no fear, except for this. Spiders, needles, blood/gore, major crises, you name it, I'm good. A silly infusion of a blood product, I'm wigged out. It's ridiculous. But off I go, regardless, with dreams of Disney and visions of all the brave kids (and adults) who've gone before me dancing in my head. Gajillions of people go through this all the time, right? I'll be fine, I'm sure. Can you tell I'm talking to me, not ya'll?

You will be fine. I had the injections (back when they still did those as a kid) and it was no big deal. If you think positive, you will have great results!

 

[luvthemouse71]

Sue this train of thought is actually coming from dis - Many times I have come across replies that include telling people they should not go at all!! (that should not be allowed on here - that is up to the person and their doctor/ family) to telling them they will not qualify for a Das. In fact after my post on here earlier today and one I posted previously asking for help on this and a related issue I have received various PM's telling me to give up asking on here and requesting to discuss off line and even 1 to thank me for trying to stand up to what is beginning to come across as bullying by those who feel more entitled than others to receive the DAS and even visit disney at all.

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. But unfortunately this DIS attitude it is starting to give Dis disability boards a bad reputation. (even commented on now in other parts of dis and in other forums).
And it is a real shame as this was once the best place to get help with all issues regarding disabilities. Please put a stop to this attitude now

It isn't bullying in most cases, it's common sense. Anywhere where there are crowds, your chances of getting sick are increased. If someone has a severe immune issue, or a severe phobia of crowds, a Disney vacation may not be the best choice for them.

A person can't claim bullying just because they don't receive the answer they want to hear.

 

[luvthemouse71]

I have some immune system issues as well - nothing anywhere near like the OP and other people are experiencing, but I don't have the ability to fight off serious infections due to cirrhosis.

I would not dream of huddling up in the house and stopping traveling because I might get sick. What kind of life would THAT be? I sanitize by the bucket, use my ECV, and I also have a DAS (for unrelated issues). Initially I got sick every time I came back from Disney but now that we know and understand about my illness I don't have this issue. Since my issue is much more minor than others', this works for me, but I obviously know that this doesn't work for everyone with more severe illnesses.

I did not request my DAS with ECV. I felt that was the most likely way of me getting it, and I limited my explanation to my illnesses that cause me the most short term problems (in my case, my bladder).

There are things that can be done to lesson chances of illness, that is true. Hand washing with soap and water is best, hand sanitizer gels are ok( they need to have 60% alcohol) but they don't work against some bugs, like C. Diff. The old fashioned hand washing is best.

I also make sure I get a flu shot yearly, as well as plenty of sleep.

 

[lanejudy]

JenniBugInPink - good luck tomorrow! I'll be thinking about you

 

[Sparkly]

Best of luck with your infusion and I hope you have a wonderful time at Disney. Hug Mickey for me!

 

[JenniBugInPink]

You will be fine. I had the injections (back when they still did those as a kid) and it was no big deal. If you think positive, you will have great results!

JenniBugInPink - good luck tomorrow! I'll be thinking about you

Best of luck with your infusion and I hope you have a wonderful time at Disney. Hug Mickey for me!

The infusion went wonderfully! No reaction AT ALL. NONE! Just got back from a lovely little celebration dinner with Husband. Thank you, everyone!

 

[tkgdisney]

I have RA as well, have a DAS card too. Go to GR, MK is so crowded, I find it easier at other parks because they have time to listen. I explain my issues and concerns with crowds and being run into by kids having fun, kids of all ages. I have never been turned down. I look healthy, they always say I look fine, but understand that looks can be deceiving. Crowds are my problem, so my son and husband block and protect so I can enjoy. Parks alone are not an option anymore, but I enjoy EVERY minute!

 

[JustPeachy2014]

I really hate to be debbie downer here but I'm wondering if a trip to WDW is healthy for you. I have no health issues that I'm aware of that contribute to me always getting a cold at WDW, but that's what seems to happen. I think I'm just prone to getting colds. But honestly, you should probably not listen to me and should really ask your doc instead. Best of luck to you!

Ignore my post... I didn't read through all the others before posting.

 

[JenniBugInPink]

I really hate to be debbie downer here but I'm wondering if a trip to WDW is healthy for you. I have no health issues that I'm aware of that contribute to me always getting a cold at WDW, but that's what seems to happen. I think I'm just prone to getting colds. But honestly, you should probably not listen to me and should really ask your doc instead. Best of luck to you!

Ignore my post... I didn't read through all the others before posting.

It's ok, I'm bad for doing the same thing. I'm a talker by nature and have to try very hard not to interrupt people. I want so badly in general to help and think I have information that will contribute! I understand.

I really have the boards here to thank for the fact that I'm doing better "immune-wise" than I have been in at least 18 months, maybe in years. If it hadn't been for the moms here, this now 56 year old woman would never have gone ahead and gotten those immunoglobulin infusions and I'm now over the sinus infection I had for MONTHS, and the chest infection I have had for over a year is almost gone. I simply can't believe it. I thought I'd live with gunky lung for the rest of my life, literally. I've been told that my RA may even improve from the IVIG. If that happens, that would be gravy. I'm happy with what I've gotten so far, and the the knowledge that I will apparently be able to fight off the cold or whatever bug I might pick up at Disney (I always get sick from Disney, too, LOL). See? Now that's an LOL, not an "I might die". Pixie dust indeed!! From now on, I'm calling them my Pixie Dust infusions, LOLOLOL!

 

[ecatzippy]

I am so glad the IVIG is working out for you. If you are not already getting it there is a free magazine called IG Living that you can sign up for which covers IG treatments for lots of different disorders. They also have a Facebook page.

 

[ttintagel]

Another compromised immune system here! Last trip, I skipped my immunosuppressant medication (under my doctor's care and advice, of course), sanitized the heck out of my hands at appropriate times, avoided as many situations as possible where I'd have to touch people or get close to their faces, and I still ended up getting pneumonia by the last day of the trip. (Collapsing into a heap on the pavement, coughing and crying, does wonders for people giving you space at the Christmas parade. But not eough to let you get through the crowd to the exit!)

I think I cracked it, though - the person next to me on the plane from New York to Philadelphia was coughing and sniffling the whole flight, and even though I turned away from her, in retrospect I started feeling a bit under the weather the next day.

To make a long story short, next time I'm getting a package of disposable surgical masks and putting one on when I get on the plane. (Naturally, due to security issues I wouldn't wear one in the airport or before boarding, and I'd talk to the flight attendant about it first.) I'd rather look like a dork for a couple of hours than miss part of my vacation to illness again. And, not that I don't trust Mousekeeping, but I'll probably bring some Lysol wipes for around the hotel room, too.

 

[peainapod]

Personally...I wouldn't go to WDW if I were you. Lots of international travelers and lots of different diseases going on right now in foreign countries that aren't in the USA.

Good luck and stay healthy

 

[bidnow5]

The Japanese wear masks all over I've seen them on planes and in Disney it's actually a good idea I'm going thru some new issues I find out in a few days why I hope. Ive already been warned by my Dr I might need a mask in public