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Behçet's UK
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Behçet’s and being in the sun?

We take family vacation every year for a few weeks to the beach. I have a husband and three kids ages between 2 and 10. I have had Behcet’S Disease now for only a few years. Is there any way that you all have found that allows you to be in the sun and not be so miserable? It is very difficult for me to chose between how I feel physically and spending time with my family on the beach. Any advice?

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Wear a hat, cover up and wear sunscreen! I’ve never let Bechets stop me having a good family vacation. These days it’s common for people to cover up because the sun can burn and cause skin cancer. there’s so much more awareness. I used to get a spray tan lol 😂 so I would blend in a little. That always helped my self confidence. The kids were used to seeing me covered up. It is frustrating!

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Thank you! I do feel as though I should be in The sun more to get a little bit of a tan while I am here. I would feel less likely to do that had I prepared with a self tanning lotion or the like.

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Yep just so you blend in a bit! I’m super fair arghh 👻 but when you have a fake tan you just feel like you’ve actually been on holiday lol. I’m a sarong and big hat and glasses woman now I don’t have small kids to entertain I can be beach chic 😂

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Yes.

1. Spray on suntan. Less physical effort.

2. Parasol. Being out of the direct sun will be better for you.

3. Take a lounger. Being able to lie down comfortably when you need a proper rest will be a life saver.

4. Breathable fabric swimwear. Avoid ulcers down below by keeping the air flowing.

5. Water. Obvs.

6. Sandcastles! Sounds silly but ball games can be so draining.

7. Get as close to the water as possible so you don’t have to walk back and fourth a thousand times.

8. Remember that when you’re done you’re done. Don’t try and be a super human.

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Thank you, I never realised that lying in a chair was far more comfortable and far less hot than on a towel or blanket! This made a huge difference!

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Hi,

I am in prediagnosis stage for BD with a CoE appt in July.

No matter which autoimmune condition people suffer from hot weather and the sun can cause misery, headaches, throbbing joints, dizziness , skin and mouth reactions and fatigue even without a full flare up.

I live near the coast , it might be Wales, but we do, like now, have some heat and sun.

Without diagnosis for over 11years! I have had to rely on managing my life and environment to keep going, here are some tips.

1. Protect your eyes.

Even if your eyes are not affected yet by light or uveitis it is one of the best ways to stop flare ups in the face and head. Get good quality sunglasses, and even wear them in the sea, they protect your eyes from sand, wind as well as light.

Get a mini spray bottle for distilled water and keep it in the fridge or in a cool place , give a gentle spray to closed eyes before going out, during the day or if your head is aching, You can also spray off your skin too if it is getting itchy or being to rash. Wear a hat if you can.

2. Comfort.

Have a good chair and some shade but also try and walk about alittle even when tired it will help reduce the throbbing, a paddle really helps with throbbing heat in the sun too. Take a wet towel in a bag to cool down with . If your head hurts it's great to put around your neck to reduce the pain and stop itchy skin too.

3.Prevention is better than cure with bug bites.

I have had severe reactions, infection and flares from bug bites, especially those sand and horse flies. Leaving getting an antihistamine or bite spray as little as half an hour and it reacts. If you can on your medication take an antihistamine before going out, put on anti bug spray or gel at pulse points and edges of under arms or sleeves and shorts and your ankles . Have bug cream or spray at hand , I can use a homeopathic pill called Apis Mel, from bees , straight after a bite which seems to reduce reaction too. If you cannot use the spray asap and keep an eye on a reaction.

4. Feet and wrists. Can throb like mad in the heat .

Use your favoured cooling moisturiser with peppermint oil in to rub in your feet and wrists before going out to the beach or sightseeing, it helps to cool them and reduce throbbing. Get some of those comfy surf shoes to wear to walk about and swim in so you don't damage your feet. Paddle and cool off in the sea then add more cream or use that handyspray bottle to cool them down, I keep my bottle in a drinks cooler bag to keep it cold. Rotate your wrists and ankles when you sit. Oddly, be prepared with socks and a cardigan even abroad , a sudden change in temperature , weather, cloud , wind or coming to sit after activity can activate Raynaud's or other numbing in your fingers or toes that can cut your trip short when you can't warm them up quick.

5. Mouth.

Keep hydrated with water, also have sparkling mineral water to drink and rinse round your mouth after those picnics, ice creams or treats because you can't clean your teeth. I take healthy or cool snacks and nibbles to the beach. If you already have ulcers it is good to rinse them with sparkling water regularly when you are out or iced green tea, take your ulcer gel with you as heat can make your mouth hurt.

6. Fun.

The good thing about the beach is you can sit or lie and read a book all day and nobody thinks your odd. Playing ball in the sea and alittle swimming with the family is easier than beach games and the cool water can help stop your skin hurting in the heat. People who live near the sea often go to the beach at quiter times like the morning or late afternoon and evening to beat crowds and not overheat. Kites and treasure hunt lists are always good , you can join in with kites without running about and send them off for treasure when you need a break. Use small but accessible coves instead of the big beaches it is easier and more fun , go on local area sites or trip advisor for your holiday area to hunt them out . Leave the phone etc. at home or at your hotel, holidays can cause their own fatigues and stress without continuing trying to chat or deal with home stuff too.

7. It is your holiday too.

Your family already hopefully know your challenges so before a holiday kindly have a sit down , let them know what help you will need so you can all get the best out of your trip.Get them to realise that travel can take it out of you, even short car trips in the heat so they will need to give you a rest when you arrive.

Unfortunately, we all try to do everything like we used too, especially if we were the organiser. Now you need to let your partner know they must take the lead in packing beach bags , picnics, driving, organising the kids with stuff or in squabbles because you will need all your energy to take part in the extra walking, activities and fun stuff you want to do together. If they know and you have a plan you will be free of the added stress or grumbles when things have gone done a certain way. If they know what type of stuff triggers your pains they will be less likely to try join together to force you to do stuff you can't and will actively keep a quiet eye out on you in the heat or for you to stop you ending up in activities or places that can trigger pain.

Have a wonderful holiday all, and don't forget the sun cream !

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I just read your post, as I was thinking about going on holiday but was actually dreading it as my 8 year old daughter and I both have been recently diagnose with behcets, and the last time I went on holiday we were both really sick and not diagnosed and at that precise time had never even heard of behcets. All your tips sound simple but have major impact on how little things can make a different. I feel more at ease after reading your post about actually taking the steps to book our holiday without the fear of what we both went through 2 years ago on our holiday. But I still must ask as like I've mention earlier we both have recently just been diagnosed with behcets. Why do we actually need to stay out of the sun.? It might be a silly question but it has not actually been been explain to me.

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Hi Dolores,

Hope you and your daughter are having a good BD day and I am glad you have found my tips helpful, and it has given you the confidence to book a holiday, something we all really need physically and psychologically with all the stress of ill health.

As, I mentioned I am still in prediagnosis stage, counting the days to my CoE appt., but I have been suffering with the various autoimmune related symptoms for over ten years and have had to build up lots of coping and environmental strategies to just keep functioning, so if you want to follow me, or chat via private message on any little things to help coping with illness and kids I will be happy to help.

In an answer to your question, and keeping in mind I am not an expert, all of the autoimmune illnesses seem to be made worse not necessarily by the sun alone , but hot weather.

It's not surprising, when the weather gets hot , even the healthiest among us suffer with itchy skin, fatigue and headaches , normal activity takes alot more energy , our bodies have to constantly work hard to keep us cool, nasty little bugs and infections have a nice , warm breeding ground to grow in, and our blood pumps faster to cope with the heat.

All of the autoimmune diseases are affected by this , but particularly BD because it has a vascular origin. As you blood is racing to keep you cool and you sweat more it impacts on itchy skin and joint issues, your eyes get dry and can trigger a reaction and light sensitive headaches are more prone to turn to migraine when your head is overhot and the vessels pump. Fatigue feels worse because you have to work harder to do things in the heat , your body can react like it does when you have an infection and begin attacking itself more. It is harder to keep your skin, eyes and mouth hydrated and clean so ulcers and other lesions can occur, especially if you also suffer from allergies, hayfever or react to bites.

Heat and sun is particularly bad for people with Sjorgrens and Vasculitis too.

Hope that helps,

More Holiday Coping Tips

Packing and planning

one big tip I have for holidays is to plan and pack well ahead of time, I pack most of my bags for the return journey at least 24 hours before departure day so that I only have to enjoy a relaxing last day before travelling.

Travelling day

Have lots of rest before travelling, If you are travelling to or from hotter countries , as well as it being cheaper I found it is easier to travel on evening or early morning flights , or in the car because it is cooler and quieter and less stressful at the airport or on the road. Get a lift to the airport , you do not want the added stress of parking or trains and buses on the way to a holiday.

Alternate activity days with relaxing days to keep fatigue from ruining your holiday and make a list of the things you want to do most at each place you visit , then go with the flow , if you only get to do the most important thing on your list and then need to spend the day resting on the beach or hotel you will still have achieved the things that made the best memories on your trip.

I have lots more tips , why not let me know where you are thinking of travelling and I can send information that will be best suited to you. Bon Voyage.

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Hi Blearyeyed

Thank you for your quick response, I do hope you get the answer your looking for from CoE, I'm under their care and I must say they are amazing. I'm so sorry to hear that you have been dealing with it for such a long time. It took over 5 years to get my daughter diagnosed as everyone she saw was determined I have a healthy daughter and I was paranoid. I understand your not an expert but sometimes I find that we get the best response to our questions and needs from the people who knows is best. The real people! Good luck with your appointment and if I have further questions I will definitely be in touch. X

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Great , happy to help in anyway I can , just drop me a line with any questions or for a chat anytime .

When you know where you fancy going or for any type of daytrip I should have some tips to help you and your daughter .

Happy Holidays

Karen

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We will be going to Spain, as that's where I'm from and have lots of family there. (Torremolino) have you been there before?

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Hi, do we burn more easily. I was just at my front yard with the dogs and when I returned indoors, my cheeks we red and hot! I was only outdoors for half an hour.

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I find that the colchicine that I take makes me more susceptible to burning without sunscreen on all the time. If I am in the garden, or just enjoying the day and am in the sun, I am wearing sunscreen.

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Not on mess yet

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I meant medication

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What time of day did you go out and are you on any medication?

Did your cheeks remain red and hot as with " sunburn" long after or did it go down quite quickly?

Uv induced erythema ( sunburn) and other erythema can be worse for people with vascular diseases like Behcets, this can be for various reasons.

Drugs can make you more photosensitive, the capillaries in the skin are often dilated in autoimmune diseases with a vascular or dermatological aspect.

Skin health is not always at its best , Vitamins required for good skin that can protect itself are often low in people with illnesses that have skin flare ups , your natural protection to sun is not high.

Sometimes inflammation in the skin , especially on your face can mimick other things, or your inflammation can be very aggressive heat rash.

After your experience though, you know now that sun can cause a reaction for you , so you know you must smear on the high factor sunscreen for sensitive skin no matter how short a time you are in the sun.

Try and keep well hydrated , keep your skin moisturised with a cream that has vitamins and zinc ( always spot test your creams to make sure you are not allergic and check the ingredients if you are not tolerant to salicylates) .

Eating lots of vitamin C, D,E , iodine and zinc high foods can help your skin and mouth from within.

Keep out of the high sun of the day , and cover sensitive areas like the scalp and make sure that areas of your body not usually in the sun are not exposed for too long and have lots of suncream on.

A good amount on cheeks, ears and nose , especially if you wear glasses and about an inch under the edges of sleeves , necklines and legs of shorts or swimsuits as these are the areas that seem to draw the UV , and your clothes move , where you think you are covered often isn't.

And that misting of water from a spray bottle helps cool you down too.

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I was out in yard at 5:30pm. Not on medications yet.

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Are you in the UK?

The sun is still very strong in the evenings here and catching lots of people out after work who going out in the sun for half an hour are finding they have burnt quickly.

Hopefully the extra sun tips above will help , sun as well as heat is just another one of those environmental factors that we have to adapt our behaviour for, quite annoying for us lovers of the great outdoors and summer .

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Thank you. It is a little strange reading with sunglasses on, but what a huge difference leaving them on the entire time. The spray bottle was also a huge help. I never would have thought of that, and I can take it with me anywhere. Simple and brilliant!

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Glad to help and perfect timing with this heatwave!

Have a wonderful holiday and if you want any advice for ways to make trips more bearable with little ones when you have health issues I am happy to help.

I Home Educated my two children whilst my illness was growing and we are a very active bunch , so I may have some more useful tips for you , please feel free to send me a private chat too anytime .

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