I went abroad in September to a hot country. Knowing that the sun can flare my lupus, I made sure to pack sensible clothing to cover me completely.( gone are the days when I just needed swimwear and a sarong during the day.) my suitcase was much heavier than allowed. I had closed in shoes and trainers as I even have to keep my feet covered in the sun. As well as all the prescribed meds and creams I had a spare walking stick too. The airline in question charged me £80 to fly with my luggage. My husband explained that I needed all my luggage and my disability. They said that unless I had a " disabled dispensation, there was nothing they could do". I am going away again in May and want to avoid this scenario again. Has anyone applied for this, even if I could get help with all the pills and potions it would be a help?
Disabled dispensation for airplane luggage. How d... - LUPUS UK
Disabled dispensation for airplane luggage. How do I get this?
They are greedy I have the same problem so know how you feel x
Hi 6161,
Disabled dispensation for airlines isn't something we were aware of and any policy may well differ between different organisations. I would imagine the best people to enquire with would be the airline you intend to fly with. Disability Rights UK may also have some information on this. Their website is disabilityrightsuk.org/
Let us know what you find out.
phone airline once youve booked
explain you have a disabling illness that requires you to take extra eqipment etc to faclitate your holiday they will hopefully mark on your booking that you have a dispensation and when you pitch up youll not get hasssle and asked for extra cash
ryainiar have a disabled policy and have said i need to do this as im disabled with arthritis and duff discs all i need do is phone ahead after booking online have not used it yet but will next year so ill let you knoq how i get on
il
Thanks to all replies. I will phone airline ( Thomas Cook.) I did look at their web and the words disabled dispensation do appear. I lost patience trying to find the info and I didn't see it applying to luggage. When I was on holiday someone told me that they saw someone with hand luggage that was put in a white plastic bag with a Red Cross on it. I think I prefer to talk to a human, at the airline so will let you know. Thanks again
I traveled with Thomas Cook airline to Jamaica in 2010 to Jamaica and they had my seat reserved for me and my two boys at no extra cost as I told the travel agent I was disabled and needed the help and extra space in the plane, at Gatwick airport I was treated very well and went on the plane first along with a group of disabled passengers. The toilets were down some stairs but we were allowed to use the toilets that the other passengers who paid extra use.
Just tell the travel agent and or the airline when you book your holiday and they will arrange things for you.
For what it's worth. I used to get horrendous flares from the sun (or so I thought), and painful rashes. Once I stopped using chemical sunscreen, and eating certain foods while in the sun, or on vacation in general..it stopped. While I was told otherwise, nobody is allergic to the sun. While the sun will rev up your immune system (that's it's job), it can be utilized for healing. Covering up head to toe all the time is just dropping your vitamin D levels further, which may very well be the root of your lupus/autoimmune disease. Try using block (not screen) on your face, but letting your body get the needed sun exposure. Never use chemical sunscreen, and limit your direct exposure based on your skin type. I am so thankful that I figured this one out, as I was neve so sick, as when I was sun/vitamin D deficient. I am in Texas! I can only imagine how sick people are in the UK…cold, overcast so often. Ae you doing something to heal your inflammatory issues? Or just taking meds to blind your immune system? Just wondering, as Tumeric, Krill Oil, and a few other things will do wonders for you sensitivities.
I'm glad to hear that you manage well in the sun, but most people with lupus do not cope well. Exposure to sunlight is a well known trigger of lupus flares. We would always recommend that people with lupus cover all exposed skin they can and avoid the hottest parts of the day. If anybody is concerned about their Vitamin D levels, they should speak with their GP or consultant, who can take blood tests and determine whether any action is needed.
You don't really care to help these people do you Paul? You are operating on very outdated allopathic theories. The very theories and practices that make and keep people ill. Is the UK just light years behind? Or is it just you? What is your diagnosis? Why do you moderate this chat room? You seem so afraid of anything that is not straight out of a 1974 medical text. If anyone wants to learn about getting better, they can visit *********
In response to all good and valuable advice I feel I must clarify some things. Before diagnosis, I went abroad every year and soaked up the rays like most. My last 3 or 4 hols were horrendous with me being ill. When I realised the connection along with other complaints, I stopped going abroad. My poor husband though uncomplaining,has missed his foreign hols. The offer of a cheap hol came up. My husband was worried, but I said if I stay in the shade I should be ok. I was and am now going again. I spent the week in long trousers, long sleeves, trainers with socks, a hat, sunshades, and sat in the shade. Being a woman, I like to try and look different each day and the clothes I wear are not lightweight flimsy cottons. Also note the months, September and May are cooler in Majorca which is where I go. It had been 12 years since my last hol and although no longer a beach bum, I still enjoyed it. I am badly vitamin D deficient, so will look at health alternatives. My vasculitus is also aggravated by the sun, but I now have hindsight, and as they say," it's a wonderful thing"
The aviation disability dispensation is, in fact, much wider in countries other than UK. Here it seems only to apply to the carriage of equipment such as wheelchairs. Really unfair!
Have just spoke to Thomas Cook airline. They say that I have to get letter from GP to say I need extra clothes and that I have meds. I have to try and calculate the weight and even how much a weeks pills would weigh and creams. The GP has to agree the weight and put it in the letter to be faxed or e.mailed. I said I have blue badge and DLA certificate but was not good enough. They did offer transport etc... In airport. I will ask GP but I've a funny feeling her letter may cost more than the cost of extra weight with airline !!!
Hi lucylou88, I hear what you are saying, I am glad to hear that you don't have to struggle in the sun anymore. However you have to remember that we all experience lupus very differently. I use to be a sun worshiper, you couldn't keep me out of the sun and was fine with it until I developed lupus. Now even the smallest time in the sun can trigger a flare and increase all my lupus symptoms. When I first became ill I was determined not to take allopathic medication and tried many other avenues to heal myself, but rather than making me better it only made my lupus worse. I also discovered that anything which had a boosting effect on my immune system caused flare ups of lupus, this includes most vitamins and minerals, antioxidants, herbal remedies and even some homoeopathic remedies. You have to understand that what might work for one lupus sufferer doesn't necessarily work for another because we are all different and experience our illness differently.
hi all,im just wondering does anyone out there have severe problems in taking the steroids used for controlling lupis as through the day I feel very anxious and nervous,sometines calms down for awhile,did not experience any of this until I was put on steroids,also I was wondering as this is my first time experiencing lupis that when u get the rash under control how long can u contunie without getting a flare up.i appreciate any replies as this is a very scary time for me.thanks.
Hi mairead3, my original question has got lost along the way and seems to have caused much conflict among some. Maybe you should post your worries as a new question, and will hopefully get a broader response. My own experience with steroids are that they seem to be the quick fix for me. I've been on prednisolone for so many years now, that I can't remember much in the beginning. You should always take them first thing in the morning, as they can keep you awake at night. This tells us how much of a kick they have. I take them everyday, and raise the dose myself. They must make your adrenaline faster, therefore leading to poss palpitations and anxiety. I must stress I am only a fellow sufferer and maybe a call to your surgery to check all ok, would help to ease your mind. I only recall having a regular sore throat in the beginning, which I still have when I raise the dose. Once again, post as a new question to see what others say. Wish you luck.
sorry 6161,i am new to using the computer as well and I didn't really no what I was doing. many thanks for your help.sorry again.
I now have to use a CPAP machine as well as all the drugs (and what a lot of space they take up!) so flying to Turkey last year with Monarch, I rang them and explained that I needed my medical bag not to count as hand baggage, and into it I put all the stuff normal people don't use. I bought a 'medical equipment' tag from eBay and it all worked perfectly: the woman in customer services I spoke to made a note on my record and when I rocked up with 2 bits of hand luggage no one batted an eyelid (or, more importantly, tried to weigh the medic stuff bag!). It's true that every airline is different, but if you don't ask, you don't get. And if a £20 GP letter saves £80 then you're still better off. Good Luck! Jo
Thanks for tips especially eBay tag. My airline want me to say how many grams for tablets and so on. I'm off to see GP today and will find cost of letter. In my surgery a list on the wall for letters, start at approx £50 upwards. That's why I made that comment, but my particular GP is nice and may not charge me much. As Paul advised I will also call disability rights. Will let you know how I get on.
Sorry no news. Went to docs to review regular bloods. Seems there's bother, been sent off for lots of tests so didn't have time to ask about price of letter.
I cant do this anymore
Such a princess so how do I cope with using a scooter
Itchy burning rush
Photosensitive
Sunshine
