Scleroderma & Raynaud's UK (SRUK)
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Having problems with travel insurance as I have lung involvement with scleroderma

Hi, am new to this site. Have been dianosed with raynauds and systemic sclerosis for five years now. I've recently had more lung involvement ie fibrosis and am having cyclophosphamide treatment at present. I'm lucky enough to be well enough to be going to Boston USA to watch my daughter compete in Irish Dancing World Championships, but am having trouble finding reasonable travel insurance. As soon as I mention that I'm on ambulatory oxygen at home the price rockets. The best so far is £600! Has anyone with this condition had any luck with travel insurance? Some companies won't even touch me! Thanks, any advice is much appreaciated.

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Last year I booked and paid for my mother, she's terminal with cancer, also a celiac, also high blood pressure (possible stroke etc). I cannot remember who I used but as long as I disclosed it, the amount was only £40 and she's in her 70's. I recommend you shop around online and as long as you disclose everything should be a lot cheaper than that.


Someone once recommended Avanti Insurance .

Their telephone number is: 0800 066 5604

They once gave me a fairly low quote. I have Scleroderma but no real problems, besides the Raynauds.


I have had Raynauds and Scleroderma since 1999. I also have lung involvement (fibrosing aleveolitis) and I attend the Royal Brompton for regular lung function tests. Last year they recommended that I should have oxygen whenever I flew (although I do not need to use oxygen at any other time). I took out travel insurance with Asda (not online - phoned and spoke to adviser). A year's policy for myself and husband, who has usual high BP & cholesterol, came to £190. I told the adviser all my ailments - Raynauds, Scleroderma, regular elective Iloprost infusions and now having to have oxygen for the flight. I know that Asda would not immediatly come to mind when thinking of travel insurance but they were ok for me. Best of luck


Thanks for all your advice it is much appreciated. Will ring asda tomorrow. Keep your finger crossed.


The RSA has a list of recommended Travel Insurance companies which have been recommended by members but you could also try the Pulmonary Hypertension Association (PHA) who specialise in lung enquiries of this nature.

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