Scleroderma & Raynaud's UK (SRUK)
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I have a chance of a trip of a lifetime but not sure what to do

Hi I have a chance to travel to Australia from England next year.

But with my illness Systemic Scleroderma and bad Raynards. I have already a few years back had cellulitis in my left leg, which was really bad.

I am scared stiff of getting DVT and I am finding it hard to explain to friends. This dream holiday would of been great a few years ago. But since I have been so ill with this illness I am frightened that I am going to make it worse.

I am under so much pressure from friends to go. They do not realise what this illness is like to have.

The distance sitting in a plane is worrying.

Has anyone done this and how did you get on?

I know I will have to see the doctor and see if I can get medical insurance cover.


6 Replies

Go, do it.

We're going to NZ next year, tickets are paid for. I'm stopping overnight in Singapore to split the journey which I suggest u do something similar.

But please do it as you'll regret it if not.

Speak to your gp before traveling though as certain painkillers you need a note to travel with.

Good luck 😃

1 like

thanks Gindy


I visited NZ last year although I found the journey long I can't say it made much difference to my SSc but we split our trip, stopping off in LA for a few days & on the way back we had a couple of days in Hong Kong.

While on the flight it's important to keep moving so we had aisle seats so we could do that & walked up & down the plane also while sat its a good idea to move your feet e.g. circling them this all helps with the circulation.

I take aspirin regularly which is also supposed to help with DVTs but check with your doc about it.

I did get health insurance but it was infact cheaper to do it for the whole year it just takes a bit of searching to find the right one at a decent price.

I have lots of medication but it wasn't a problem but did take a full copy of my medication print out from the docs - the repeat prescription was all I needed with the the medication and they didn't even look at it when going through security but needs to be in clear plastic bag in original packaging with the pharmacy label on but always tell them first that I have it & that I carry 3 inhalers along with Methotrexate. Check with your airline about the protocol for carrying medication through security.



The insurance will be a problem I have acts and all the wonderful problems I have given up worrying about what I can't do I only go as far as Germany ut then spend 2 days getting to the south of France with my grandchildren it is painfull but it is something you should do I paraglided of the French alps after two days in a car with three children at least you will be able to get up and move see if the doctor can give you any painkiller. good luck


I have done several long flights since being ill. Off to Burma in November. I take aspirin, wear support socks and spend most of the time on board walking around or walking on the spot at the back of the plane. This illness is a horrid thing to live with but try to not let is stop you going off on adventures! There are other posts on this forum re holiday insurance which have some good suggestions of providers. GO and HAVE FUN!!!

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I have a similar dilemma as my oldest son of 24 is living in Sydney and desperately wants us to visit him. I struggled with NYC a few years ago and that was half the distance.

I think we could only do it if we broke the journey up and chose aisle seats. The pain in my legs was horrendous last time and I had to keep getting up and down constantly to cool my legs down at the rear of plane to reduce the burning nerve pain and swelling. I have neuropathy so couldn't face the stockings but I will make myself wear them when we go.

I have primary Sjogren's with Raynaud's rather than Scleroderma so I think the main thing for me would be to keep very well hydrated to cope with air conditioning and keep mobile as I can't tolerate aspirin - it makes my nose bleed very badly. It's quite a thought I know but I do agree that we shouldn't let the disease stop us from big adventures if at all possible.


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