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Sticky Blood-Hughes Syndrome Support
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Travelling with an invisible illness...

Hi guys, I wanted to share a post I recently wrote on what it's like to travel with an invisible illness. I'd love to hear your thoughts on it, and hope it inspires some of you to go out and see the world! :)

ladieswhat.co.uk/travelling...

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Hi, You write you have got APS. Are you on Warfarin and selftest as that would be easier to stay in range and keep the INR in the right place. Do you take extra Fragminshots before flying?

Best wishes from Kerstin in Stockholm

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Hi Kerstin, I was on warfarin and yes got the coagcheck machine and would self-test, but a few months ago I was moved over to the new anticoag drug, Apixaban. No more testing needed, so it actually makes travelling even easier! x

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Good for you, I did spot this on social network, well done, it is always great to read of such intrepid travelling. I hope you do loads more. MaryF

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Thanks v much Mary, it's been lovely reading the feedback I've had, so glad I went ahead and wrote this! (was umming and Ahing about it for months!)

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Wow Keri, thank you for that lovely story as I have been scared to death to travel by air since being diagnosed with APS. My husband often asks doctors if I can travel as he is itching to go. I always get a resounding yes with much caution. You have inspired me to step out of my comfort zone and take baby steps towards a little more normal life. What an absolute beautiful smile in your Florida selfie. I want to experience that smile again with travel. Thank you so much for sharing part of your story and life with us. So much appreciated and understood from a fellow survivor.

-Noelle

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Noelle, so happy to have inspired you to take that leap. It's scary, but you can do it! Perhaps talk to your Dr about getting a medical letter requesting a bulkhead if it will help you, and find out what else you can do to make your travels as safe as possible. Yup do little steps like me, a bit further each time and eventually you'll be able to do a round the world trip. Your words mean a lot - do keep in touch and let me know how things go! xx

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You're a star.tried to leave reply on site but had problems

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Thanks so much! :D Sorry to hear you had problems commenting - can you let me know what the issue was and I can take a look into fixing it.

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Wouldn't take my name etc so did I need to register

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Hmm, I think you need to put in your email address, but that isn't published...

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Your comments about flights and the right seats rang a few bells. I have had countless arguments over the years trying to get the right set. As you suggest, you are never at ease until you get to the seat you expect. I was convinced that staff adopted the 'tell them anything as they cannot come back and argue' procedure for dealing with my request for assurances. Being both tall and on the heavier side there were only a few seats that I was comfortable in. I had also had a stroke on an aircraft once. As soon as I mentioned anything to do with illness they would ban me from any emergency exit. They simply could not understand that the legroom was needed as apreventative measure. At one point I even had an email from the European Commission on Human Rights confirming that I should not be discriminated against because of my health /disability-but it didn't wash with the Civil Aviation Authorities. One airline did say I could have a bulkhead seat at no extra cost, if arranged in advance. However such seats were better but not suitable. I stopped flying for years because of the hassle. Now I book one of the only three seats that are suitable, and I don't say a thing about health issues . It costs but saves so much hassle it has become worth it. Much as I would like to travel further, four hours is all I can put up with. I used to joke that I walked most of the way but these days they get very nervous about passengers who are up and about all the time. Congratulations on your achievements.

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Thanks Tim and sorry to hear you've had such a nightmare time with it. It's really frustrating isn't it? I often keep schtum in order to get an emergency exit seat but for me the bulkhead is a better option.

Now it seems the bulkheads are considered premium seats that you have to pay on average an extra £50 for. It really annoys me, but I'll still pay it in order to be more comfortable and less stressed...

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