WDW with Lupus?

[scrappinmom]

Hi everyone - I have a general question. I've been to DW many times and after about 4 days the sun sensitivity from my meds kicks into ultra high gear and I end up with a blazing rash everywhere! This upcoming trip we'll be there for 12 days so the trip is twice as long as previous ones, but we're going in March (instead of October) so I'm hoping the sun is less intense.

My question is for those folks that may have a sensitivity to the sun, how to you manage WDW? Any tips/secrets that maybe I haven't thought of before?

thanks

 

[Piper]

I have lupus and there are several things that I do. First, I wear solumbra clothing that protects form the sun and a hat. I also wear a cooling vest that helps a bunch (not exactly a fashion statement.) I go early, go back to the hotel mid-day and rest, then go back in the late afternoon. I have been dealing with this for most of my life and have learned to listen to my body. You can also go to first aid and cool down and rest.

Be sure to stay hydrated and avoid the sun as much as possible.

 

[scrappinmom]

Thanks Piper...I went & found the Solumbra site & ordered a catalog...I've only been diagnosed for about 2 years, so I'm still learning how to deal with it.

Thanks again

 

[Schmeck]

I've had melanoma, so the sun is a big no-no for me too. I second the going early, leaving for a break that Piper suggested. I wear long cotton skirts, with sunscreen on my legs for protection from reflected light. Tight weave t-shirts, more sunscreen, UV sunglasses, and a big brimmed hat.

We actually tend to go down in August, as the parks are open really late, and that's when we do a lot of touring. Since Florida is pretty far south, the sun is almost as intense in the spring and fall as it is in summer, and the winter hours are either really early, or late but overcrowded.

Thanks for the Solumbra info!

 

[mechurchlady]

If you are a slow walker and the rest of your party can move at a good pace then get an ECV so you can zoom from shade spot to shade spot.

Go to Animal Kingdom and the Studios in the morning as that opens at 9 am in March and an hour earlier with Early Magical Hours but they close earliest usually. Then you can rest at the hotel and then hit Epcot or the Magic Kingdom in the evening or right after the first park. Epcot is open until 8 or 9 pm and 3 hours later with the Extra magical hours on Tuesday and Thursday. MK closes 8 to 11 pm and with the EMH you could stay until the wee hours of the night. The ultimate park hopper could start at AK at 7 am and finish after midnight shopping at MK but personally I could not do 17 hours of parks. I once did 25+ hours at DLR and never again . Nurses stations for nap attacks if you need.

Go to Guest Services and ask for a GAC and explain your needs such as no sun. Before Easter is not so crowded and with Single Rider and Fastpasses you should be able to avoid the lines.

Also look at videos and use your memory to try to plan the trip so you do outdoor stuff first like Dumbo and Tea Cups first then Peter Pan and Small World. You can take the Train at MK around to Frontierland and do Frontierland, Liberty Square then go through Adventureland in the morning. You could take the train at MK to Toontown and do Tomorrowland and Fantasyland in the morning then leave. That would save walking in the morning thus conserving energy and save you time by not walking.

 

[SingingMUA]

I have Lupus, and I'm newly diagnosed, as well. My first trip as a Lupie was June 2008. I was also there for a quick trip for Labor Day weekend and just two weeks ago for a very last minute one night trip. I had to do things a bit differently than previous trips, but still had a great time. I am sun sensitive, and get fatigued easily as well, especially in the heat. In addition, as part of my treatment, I am on blood thinners, and therefore it is recommended that I not spend too much time in the heat.

For me, an ECV really makes my life easier, it helps me not to get fatigued so quickly, and helps with my joint pain and leg pain (I have post-thrombotic syndrome due to a DVT... the DVT was the catalyst that helped the docs discover the Lupus). I wear hats, SPF 80 sunblock (Neutrogena makes some and it's about $10 for a small tube, but soooo worth it for sun-sensitive folks), and I carry a Misty Mate and a fan. All of those things help keep me cool, keep fatigue at bay, and help me deal with sun sensitivity (FYI - the sun also gives me a rash, but also makes my joints hurt and brings on fatigue like nobody's business!).

Another way to deal with it is to leave for the parks later in the day. So, I may hang out around my resort, sleep in (that fatigue again), etc. Then I head out for the parks around 1pm or 2pm. That way, I'm spending less time out during the periods when the sun is most intense. I've looked into sun-protective clothing, but honestly (for me) it is quite expensive, and also the idea of wearing long sleeves in the heat makes me hot just thinking about it!

Anyway, feel free to PM me if you like. Happy travels!