Different kind of Disablity.

[foster32203]

I am hoping someone could give me some insigt. My daughter was diagnosed with a rare disorder calle Mastocytosis. It's symptoms include:
Fatigue
Bone or muscle pain
Skin lesions (urticaria pigmentosa) and itching
Headache
Abdominal discomfort
Nausea and vomiting
Food and drug intolerance
Anaphylaxis (shock from allergic or immune causes) - etreme cases

Theses are a few symptoms that my daughter fight every day. She looks relatively normal, unless her skin lesions appear. Most of these symptoms, especially the skin lesions are brought on by exposure to heat. I am just curious if anyone knows if Disney would help accomidate her if she has to stand outside in line for long periods, I'm not trying to jump ahead of the line. Infact if the lines are inside we are more than willing to wait, I am just concerned about her outside exposure to the heat. I just want her to be comfortable and be able to enjoy her trip to Disney.

An example is last year on our Disney Cruise I let her get in a hot tub...big mistake. Poor thing broke out with skin lesions that made her miserable for several days and also got looks from others thinking she had the plague.

Any suggestions would be great. I tried to contact Disney but did not really get any where. They just told me to go to guest services at the enterence when I get there. If that is the case, do I need a Doctors note?

 

[geek+nerd]

Most of the lines at Disney World are indoors. It is most likely that she will spend more time outside walking from attraction to attraction than she will outside in line.

Some of the exceptions I can think of are mostly shows. Those lines are usually outdoors.

You can go to GS and explain your daughter's needs. A CM will then determine if a Guest Assistance Card (GAC) will help her. Check out the stickies for more info.

Good luck!

 

[Smile&Nod]

besides a GAC, have you considered getting her a pretty parasol? They customize them in the MK and at Epcot (near France) - she can use this as a sun shade while she walks from place to place - if it is hot that might help!

 

[Piper]

I have sun and heat intolerance so I go at rope drop and leave right after an early lunch. I get from place to place by staying close to the perimeter of the buildings in the shade. I also have a cooling vest that helps a lot. (my doctor prescribed it.)

Then I go back in the late afternoon if I am feeling well enough. The shadows are my friend! (One of my challenges is Lupus and the sun can make me break out in a rash and get very sick.)

 

[rjthkids]

Foster, I have a good friend whose son has mastocytosis! She has done disney. One thing I know for sure is she has her son use a wheelchair there. He is 11 and can walk, but all the exertion trying to walk at disney leads to pretty rapid anaphylaxis for her son.....the last thing you want on vacation! I will ask her about any other tips she has!

 

[foster32203]

rjthkids - Anything you could find out would help. My daughter is still able to fit in a stroller so we plan on using that. Since not many know about the disease, many don't realize the affects it has and how quickly it esculates. Since she looks normal, I'm afraid someone at the customer service counter will think I am full of you know what!!! If you find out any information please let me know. I just want to plan accordingly. Thanks!

 

[pbrim]

If you are using a stroller, go by Guest Services and get a "Stroller as Wheelchair" tag. This will allow you to take the stroller all the places where wheelchairs are allowed but strollers are not. While there, you can discuss your daughter's issues with the CM and see if there is anything else a GAC can do for you. It doesn't matter what her diagnosis is, or whether they are familiar with it -- what they want to know is what things she has problems with so they can try to find solutions for it. Such as, "She is easily fatigued" is dealt with by a Stroller as Wheelchair tag.

 

[lanejudy]

...Since not many know about the disease, many don't realize the affects it has and how quickly it esculates. Since she looks normal, I'm afraid someone at the customer service counter will think I am full of you know what!!! If you find out any information please let me know. I just want to plan accordingly. Thanks!

Actually, the "diagnosis" is not all important and you can skip that in your conversation with Guest Services if you prefer. GAC is based on needs, not diagnosis. Be prepared to discuss her challenges as they relate to a day at the theme park. And your DD will need to be with you - she can sit off to the side with the rest of the family if she doesn't want to stand in line, but they more than likely will require to at least see her and possibly speak to her (depending on how old).

Enjoy your vacation!

 

[Mom2M07]

Have you considered a cooling vest? My DD has a metabolic condition that causes heat intolerance and wears a cooling vest for temperatures greater than 75 degrees. They have pretty basic ones that you wet with water (about $50) all the way up to ones that include ice packs (about $200). It may allow her to stay cool enough to ward off the skin lesions.

 

[Sunnywho]

You want to explain at Guest Services how serious the condition can escalate. No, you don't need a doctor's note. Also as someone who suffers from heat intolerance that can (worst case scenario) lead to increased permanent disabilty, don't even take a chance on the summer or summer-shoulder months. You can't get cool at Disney World between May and September, in my opinion, when the parks are crowded and surface-of-the-sun hot.

 

[livndisney]

I think you need to consider what you think WDW can do to assist.

Getting from the TTC to Mk can be a very HOT experience. Even taking the bus to the MK you will be in direct sun most of the time up to the turnstiles. Getting from one attraction to the next-there is no assistance-for the most part you are unshaded. Character meets are often in the sun. Several rides are in the sun (Dumbo, Aladdin, Autopia) Teacups (outside no a/c). Parades-in the sun.

The parking lot to Epcot-direct sun, World Showcase-direct sun, Princesses around World Showcase-direct sun.

I say this not to discourage you-we live here and deal with heat/sun issues. The only time we go to AK is Jan/Feb. SWW not an option with all the character meets in the sun-no assistance.


You may want to really consider when you travel-summer is HOT. We are currently in the 90's everyday. If we go to the parks it is rope drop until about 11/12 or in the evening after the sun goes down. Even with that we take several a/c breaks.

 

[KPeveler]

Disney does try to keep things in the shade, but there are times that lines end up outside especially some of the older rides and attractions in MK.

You may be surprised to find a few people on this board with a mast cell disorder, as it has recently been linked to Ehlers Danlos Syndrome and there are a lot of us with EDS on the board.

The strongly suggest looking into a cooling vest, and doing whatever you can on your end to avoid triggers -- even if this means looking into larger strollers or better canopies.

there are first aid centers in every park where you and your child can cool off if the date begins to get too hot.

and as others have said, definitely ask a guest relations to see if there's anything they can do to help.

 

[mackay_j]

I have sun and heat intolerance so I go at rope drop and leave right after an early lunch. I get from place to place by staying close to the perimeter of the buildings in the shade. I also have a cooling vest that helps a lot. (my doctor prescribed it.)

Then I go back in the late afternoon if I am feeling well enough. The shadows are my friend! (One of my challenges is Lupus and the sun can make me break out in a rash and get very sick.)

Sorry to hijack the thread, but I am keen to find out more about the cooling vest. I have lupus and MS - pretty unlucky I guess. Are the vests heavy to wear, and are the comfortable. I am from the UK and not sure where we can get them here, are they easy to buy in the US.

 

[Piper]

I find the cooling vest comfortable. I wear it with no problems. I think you could do a search and find suppliers with relative ease. Here they are on Amazon UK http://www.amazon.co.uk/cooling-vest/s?ie=UTF8&keywords=cooling vest&page=1&rh=i:aps,k:cooling vest

 

[cynzilla]

I use POLAR PRODUCTS www.polarproducts.com. They have what is called a "vest" in the "Kool Max" line that is actually more like an ice belt. They also have neck wraps, hats and ones that go around wrist and ankles along w the full body vests.

I have ordered several times from the company and they have been awesome, even made a custom item on a special request.