hEDS-question

[SaraJR]

Hi there I have hEDS I am lucky mine is relatively mild. However, sometimes it is very hard to stand for extended periods of time, is there anything Disney can do to help me I am fine waiting however long I have to wait but sometimes I need to sit, my other issue is sometimes I get no warning period when I need to pee and am worried about long lines if I can tell them and leave the line and come back or if they'll let me sit somewhere for however long. Last time I went I left the park early twice sick (I wasn't diagnosed yet so I didn't know what was wrong at the time).
Thank you.

 

[gap2368]

You will need your own set if you need to sit as even the benches around the park have been removed. Your set can be an ECV an wheelchair you push when not needing to sit or a roller ( a walker with a set build into it.). Having something is the only way to have a set when needed.

 

[SaraJR]

You will need your own set if you need to sit as even the benches around the park have been removed. Your set can be an ECV an wheelchair you push when not needing to sit or a roller ( a walker with a set build into it.). Having something is the only way to have a set when needed.

Thank you, i figured that might be the case

 

[gap2368]

Thank you, i figured that might be the case

You
Do not need to keep what every you bring in the parki for a set with you all the time. You can park it and walk around the area go shopping or go on a short ride

 

[SaraJR]

TBH I will probably just sit on the ground like i did last time lol

 

[kylieh]

Our daughter has hEDS and we’re just back. We hired her a wheelchair they was delivered to the hotel. As she is under 18 she couldn’t hire a scooter which would have been our preferred option otherwise.

 

[gap2368]

OP You need t do what is best for you. With this said I do not know why you do not want to use a mobility device but if you need to sit then having something with you would be the only way. As our @mamabunny would say if you needed glasses would you refuse to use them if you needed hearing aids to hear would you refuse to use them? You see these are all tools that people use every day, my guess is that you came here because sitting on the ground did not work too well for you last time if this is the case I would really look at why you do not want to use a mobility device. chance are someone here has felt or been in the same place you are right now.

 

[SaraJR]

OP You need t do what is best for you. With this said I do not know why you do not want to use a mobility device but if you need to sit then having something with you would be the only way. As our @mamabunny would say if you needed glasses would you refuse to use them if you needed hearing aids to hear would you refuse to use them? You see these are all tools that people use every day, my guess is that you came here because sitting on the ground did not work too well for you last time if this is the case I would really look at why you do not want to use a mobility device. chance are someone here has felt or been in the same place you are right now.

Thank you <3

 

[Bjkandma]

I would like to suggest you use an ecv. You may find with the heat and all the walking required it could be a good investment (renting) for the trip. I've used an ecv for my trips to Disney. You are asking if Disney has,anything to offer you. Disney recommends a wheelchair or ecv for mobility issues. As previously stated, Disney has eliminated most of their benches

 

[camper06]

Hi there I have hEDS I am lucky mine is relatively mild. However, sometimes it is very hard to stand for extended periods of time, is there anything Disney can do to help me I am fine waiting however long I have to wait but sometimes I need to sit, my other issue is sometimes I get no warning period when I need to pee and am worried about long lines if I can tell them and leave the line and come back or if they'll let me sit somewhere for however long. Last time I went I left the park early twice sick (I wasn't diagnosed yet so I didn't know what was wrong at the time).
Thank you.

I don't know if you've read about the DAS. Not sure if it will help, but you could take a look at the info to see how it works. There is more info posted in this thread:

https://disboards.com/threads/wdw-d...15-digital-das-on-tickets-magicbands.3178976/
The DAS will not provide you a place to sit while waiting, but would allow you to wait outside of the line.

Good luck with your trip!

 

[gap2368]

I don't know if you've read about the DAS. Not sure if it will help, but you could take a look at the info to see how it works. There is more info posted in this thread:

https://disboards.com/threads/wdw-d...15-digital-das-on-tickets-magicbands.3178976/
The DAS will not provide you a place to sit while waiting, but would allow you to wait outside of the line.

Good luck with your trip!

Since the op meds a place to sit they will need to bring there own set with them ( even the op said they had to sit on the ground ) as Disney can not Guarantee A place to sit.
The below is take from Disney website about then DAS and since the OP can be accommodated with a mobility device I would think the DAS would not be issued ( and I hope for the OP it will not be issued becuse what if there are no set when waiting for a return time what if they get stuck somewhere and need a set but can not even sit on the ground.
Does a Guest whose disability is based on the necessity to use a wheelchair or scooter need DAS?
A Guest whose disability is based on the necessity to use a wheelchair or scooter does not need a DAS. Depending on the attraction, Guests utilizing a wheelchair or scooter will either wait in the standard queue or receive a return time at the attraction comparable to the current wait time. For some attractions at Walt Disney World Resort, these Guests will go directly to an alternate entrance. Guests with additional needs should discuss them with Guest Relations

 

[camper06]

Since the op meds a place to sit they will need to bring there own set with them ( even the op said they had to sit on the ground ) as Disney can not Guarantee A place to sit.
The below is take from Disney website about then DAS and since the OP can be accommodated with a mobility device I would think the DAS would not be issued ( and I hope for the OP it will not be issued becuse what if there are no set when waiting for a return time what if they get stuck somewhere and need a set but can not even sit on the ground.
Does a Guest whose disability is based on the necessity to use a wheelchair or scooter need DAS?
A Guest whose disability is based on the necessity to use a wheelchair or scooter does not need a DAS. Depending on the attraction, Guests utilizing a wheelchair or scooter will either wait in the standard queue or receive a return time at the attraction comparable to the current wait time. For some attractions at Walt Disney World Resort, these Guests will go directly to an alternate entrance. Guests with additional needs should discuss them with Guest Relations

I know Disney does not guarantee a place to sit. That's why I mentioned in my comment that the DAS does not provide a place to sit. I was more suggesting the DAS for the other issue she mentioned, which is not a mobility issue.

 

[Starwind]

OP, you describe two distinct needs.

For the "hard to stand for extended periods" issue, Disney generally considers that to be a stamina/mobility issue, and their solution is for the guest to use an ECV, wheelchair or similar mobility aid. As others have noted, if you "need a seat" you pretty much have to bring it with you.

Many people who rent ECVs or wheelchairs for Disney trips do so ONLY for Disney trips and do NOT need them at home. But the distances and/or amounts of standing/being on one's feet involved with a Disney trip can mean they DO need such a device in order to have a better experience at Disney. I am one of those people. Don't need it at home, but to do WDW, even for one day, I need an ECV. So I rent one from an off-site vendor and consider it a cost of my trip -- but it means I am in less pain, can do more, and have a much more pleasant trip for myself and my family than if I did not rent one.

For the "need to pee NOW" issue, this may or may not be something Disney would agree could be accommodated with a DAS, since ultimately the issue affects your ability to spend the wait time IN the line environment. Nowbody here can tell you if they will, though, it is something you would need to discuss with guest services and they will decide. Keep in mind, their concern is not your diagnosis or the specifics of your condition(s), but rather what your NEEDS are as they pertain to waiting in line or why being able to wait outside the line would be better. Since they may say "no", you also need to have a backup plan/strategy for how you will navigate the parks and lines. Even if they give you a DAS, you may find that backup strategy works much of the time and you need minimal use of the DAS itself.

SW

 

[gap2368]

OP, you describe two distinct needs.

For the "hard to stand for extended periods" issue, Disney generally considers that to be a stamina/mobility issue, and their solution is for the guest to use an ECV, wheelchair or similar mobility aid. As others have noted, if you "need a seat" you pretty much have to bring it with you.

Many people who rent ECVs or wheelchairs for Disney trips do so ONLY for Disney trips and do NOT need them at home. But the distances and/or amounts of standing/being on one's feet involved with a Disney trip can mean they DO need such a device in order to have a better experience at Disney. I am one of those people. Don't need it at home, but to do WDW, even for one day, I need an ECV. So I rent one from an off-site vendor and consider it a cost of my trip -- but it means I am in less pain, can do more, and have a much more pleasant trip for myself and my family than if I did not rent one.

For the "need to pee NOW" issue, this may or may not be something Disney would agree could be accommodated with a DAS, since ultimately the issue affects your ability to spend the wait time IN the line environment. Nowbody here can tell you if they will, though, it is something you would need to discuss with guest services and they will decide. Keep in mind, their concern is not your diagnosis or the specifics of your condition(s), but rather what your NEEDS are as they pertain to waiting in line or why being able to wait outside the line would be better. Since they may say "no", you also need to have a backup plan/strategy for how you will navigate the parks and lines. Even if they give you a DAS, you may find that backup strategy works much of the time and you need minimal use of the DAS itself.

SW

Just to go off this even with the DAS for your bathroom problem I still would not pass up a bathroom and go more often then you think. I would have something for just Incase ( the line is longer then posted the ride breaks down and so on ) and you are unable to make it to the bathroom depending on how often this I have to use the bathroom and now happens ( like once a day once a week a few times a day) will depend on what precautions you should take. Also if this is something that happens quite often have you talked to your dr about it. ( not to be noise ) but there are thing you can do. Like medication making sure you empty your bladder every time you go ( often this just mean sitting on the toilet for a minute to make sure you have). Going to the bathroom often. And a few other thing ( please talk with hour Dr before doing anything).


Just too add to this. There are a few time where I have to go now and I mean like I had to go 30 minutes ago now. Well any ways one of theses time when I had to go now was right after the fireworks this was back when they had the FP area for the fireworks and I had the FP spot for the firework ( the garden view in front of Casey’s corner) so I ran to the bathroom but of code there was a long line when I got threre I know I could not wait so I rain to first aid was panicking going I need to use the bathroom the nurse opens the door to go in the back I never stoped my fast walk went right in the handicapped bathrrom that was right there and sat down then went oh I hope no one comes in since I forgot to lock the door ( no one did). But if you find you need to go now and the line for the bathroom in long by casey’s corner you can use first aids bathroom. And they have first aids in all the parks

 

[StitchesGr8Fan]

Totally off topic OP, but what other symptoms do you have that led to your hEDS diagnosis? I have the hyper mobility, IBS, bladder spasms. But my skin isn’t overly stretchy so my rheumatologist said it’s not EDS. It’s just hyper mobile joint syndrome with fibromyalgia to go with it.

 

[OurBigTrip]

I don't know if you've read about the DAS. Not sure if it will help, but you could take a look at the info to see how it works. There is more info posted in this thread:

https://disboards.com/threads/wdw-d...15-digital-das-on-tickets-magicbands.3178976/
The DAS will not provide you a place to sit while waiting, but would allow you to wait outside of the line.

Good luck with your trip!

DAS is not the appropriate accommodation for mobility issues.

 

[SaraJR]

Y

Totally off topic OP, but what other symptoms do you have that led to your hEDS diagnosis? I have the hyper mobility, IBS, bladder spasms. But my skin isn’t overly stretchy so my rheumatologist said it’s not EDS. It’s just hyper mobile joint syndrome with fibromyalgia to go with it.

Your symptoms match common misdiagnosis of hEDS to be honest, I would ask to see an EDS specialist or geneticist. I was diagnosed as a kid so I am not sure why they tested me I assume due to frequent dislocations

 

[kylieh]

Totally off topic OP, but what other symptoms do you have that led to your hEDS diagnosis? I have the hyper mobility, IBS, bladder spasms. But my skin isn’t overly stretchy so my rheumatologist said it’s not EDS. It’s just hyper mobile joint syndrome with fibromyalgia to go with it.

Stretchy skin isn't always synonymous with hEDS. This may help: https://www.ehlers-danlos.com/2017-...yndrome-clinical-description-natural-history/

 

[Stevecari]

My daughter has hEDS as well as several other disorders. We have a motorized wheelchair for her. I’d highly recommend a scooter or motorized chair. Our daughter found that holding her arms out to steer the scooter to be very tiring and painful after a while which is what lead us to the motorized chair.