I have no idea on travel insurance , but as i live in Australia , when I am we'll enough I would like to travel to Europe by air

However with CSS everything I read is that when the cabin de compressors or what ever it does our veins are affected and flying is really not an option for travel , can anyone shed some light on this rather restrictive issue for a person of 58 with this dreaded syndrome that I have had for 5 months , thank you

8 Replies

  • Hi Skipper55, I have travelled down to Oz to visit family for six weeks this year and am currently in Sydney. Both my wife and I also visited Melbourne and have driven the Great Ocean Road, both ways, while here. I have rheumatoid vasculitis with myocarditis while my wife has atrial fibrillation following a heart attack plus also lung cancer which is now cleared after a double lobesectomy operation in March. Consequently our travel insurance cost has risen substantially as a result but with a little shopping around we managed to get reasonable cover. I have spoken to a colleague in Melbourne who is the Australian contact for Vasculitis and also suffers from GPA (wegener's). He says that getting travel insurance in Australia is difficult if not prohibitive cost wise and he travels abroad anyway just on basic insurance since he reasons that if he is fit enough to travel he should be OK. If he does get a relapse while abroad he would just fly home early though this hasn't happened in the last 38 years he has had the disease. Vasculitis UK has some companies listed in the UK which might help and I could send you details of the one my wife and I used, they were very helpful.

    I hope you get better soon and get to travel to Europe and the UK.


  • Albanian , from what I have read it's when the cabin decompresses , there is a very high risk that air travel is almost prohibitive , thus my question , there is a lot on the net regarding this issue , there is very few with CSS in Australia , once on the ground at either end is as it is , but the info on the flight is very conflicting , however you are a survivor of flight

  • Albasain,I have WG and my son has just moved to Perth , Australia. I am interested in the travel insurance you used. Could you Email me details at jmhjones@tiscali.co.uk? I am 79 so that may be a factor,of course. Thanks for your help. Mags1701

  • As an addendum to my last reply there is a reciprocal arrangement for medical care between the UK and Australia so you can be treated for any emergency care if needed. To that end I always get my Medicare number renewed whenever I visit Oz. Hope this helps. D

  • Hi Skipper55,

    Just a thought. Would the effects of the flight and cabin decompression depend on whether your CSS is active or in remission? Have you asked your consultant for their opinion?



  • Hi skipper55 and Keyes, just to let you know what we did before travelling long haul to Australia. Both my wife consulted with our medical experts as to our travelling to Oz, as mentioned before our conditions are Rheumatoid vasculitis with myocarditis and also in my case mono- neuritis multiplex in both legs having to wear compression stockings permanently, in my wife's case atrial fibrillation plus asthma, COPD and with a controlled thrombus in her left leg. Our consultants gave us the all clear for the journey. We would advise that compression stockings be worn when undertaking long haul flights tho on short flights these may not be necessary. Also exercise should be done during the flight to keep the blood flow going especially in the legs, get up and walk about the aisles of the plane often. Don't drink alcohol but do drink plenty of water. Hope that helps. If your consultants give the all clear then just do it.

  • Thanks so much for your response , I go back into hospital for another round of treatment mid jan , and will follow through , with illnesses such as ours we need to look forward to some adventures to help us cope mine is sailing in the med and Oz is 26 hours away from the med , I really thought I was grounded

  • It is a critical question , but the remission issue would put a lot of pressure on booking

    A trip , I have not experience remission stage in fact the list of symptoms are growing

    The week before Christmas my wind pipe closed and the suffocation was awful , fortunately a nerve in released itself , I have had 2 rounds of procedures to stretch etc the wind pipe to avoid a repercussion , you never know what will happen next

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