Lupus and traveling

[PLUTO2]

My primary doctor believes I may have Lupus due to test results and symptoms and has referred me to a Rheumatologist.Unfortunately I cannot get an appointment until a month after our trip to WDW. Can anyone share advice on traveling? Thank you.

 

[JenJen]

I do not have lupus but have a similar health condition and would love to help you. Can you be a bit more specific about what type of advise you need? Hope to hear from you soon
JenJen

 

[SueM in MN]

as Jen wrote, having a bit more detail about what your specific concerns are would help us to give better advice.
You might want to check the disABILITIES FAQs thread for some information that might be helpful to you. If you are concerned about fatigue or joint pain, check out the information about ECVs. The information/explanation about GACs (Guest Assistance Cards) might also be helpful to you.

 

[okck]

My parents are there this week and my Mom has Lupus. She has to make sure she stays out of the sun. She went online and found a store that sells long sleeve shirts that are not heavy, but treated to keep you protected from the sun. She wears the shirts and always a hat.
She also paces herself. Make sure you don't over do it. Check with your regular doctor too. Hope this helps and I hope things go well for you.

 

[PLUTO2]

I am so happy for these boards!Truthfully Lupus and autoimmune disorder is still so new to me and I was not really sure what to ask. I have thought about canceling the trip but do not want to disappoint the family. I figured with the pain issue the main thing would be to take it easy so I have planned a couple days with no parks involved just activities around the hotel like swimming and relaxing. I also will keep in mind the ECV if needed but wondered if they were short in supply? Thank you for your help!

 

[malibuconlee]

I'm sending you a PM.

ETA: it won't let me.

I can send you a link to a UK lupus website/boards. The person who started it also has a WDW message board. NOt sure if I'd be allowed to post it.

 

[SueM in MN]

I'm sending you a PM.

ETA: it won't let me.

I can send you a link to a UK lupus website/boards. The person who started it also has a WDW message board. NOt sure if I'd be allowed to post it.

Go ahead and feel free to post it.

 

[malibuconlee]

Lupus website

Cool. There it is. There is a message board included in the site. Hope it helps. I know the person who started the board has traveled from the UK to WDW.

 

[PLUTO2]

Thank you!