A guide to light sensitivity for people with lupus

[HealthUnlocked]

Summer is upon us and so is the sun. As exposure to the sun increases so does the likelihood that people with lupus will experience photosensitive rashes or other symptoms linked caused by exposure to UV. Light sensitivity associated with lupus can cause feelings of unwellness and even exacerbate already existing symptoms.

As a result, LUPUS UK has created a guide for light sensitivity. Click the link below to understand more about light sensitivity and get answers to questions like these:

-Do drugs provide protection against sun-induced flares of disease?

-How can I afford to buy so much sunblock?

Read more here:

lupusuk.org.uk/wp-content/u...

[flo_IarFachYrHaf]

just be a bandit and cover up completely and add an umbrella if middle of the day...!

[Lupiknits]

Thank you for this. I avoid the sun - and have done since before I was diagnosed - but didn't realise it could have effects beyond just the skin. Very, very useful

[madgirl]

I am finding it very difficult as the years pass. My skin is getting so sensitive I have a sort of hive rash all the time. When the sun's out its even worse. I always use 50 block suntan but it's not enough. Where can I buy clothing for sensitive skin. That wouldn't cost the earth

[Paul_Howard Partner LUPUS UK in reply to madgirl]

Specialist UV protective clothing is generally quite expensive unfortunately. You can get special washing powders to increase the UV protection from regular clothing though. An example can be found here - tesco.com/direct/rit-dye-su....

[madgirl in reply to Paul_Howard]

Thank you for that . Will give it a go. I will also let others know , as I know that they have the same problem.

[flo_IarFachYrHaf in reply to madgirl]

I'm really lucky and have parents who design and make clothes so have to the floor dresses and a skirt plus long sleeve blouses made from a uv protection cotton - cool and covered. If it's not so hot I use bamboo fibre clothing. stuff designed for sports, that have long sleeves. Keep an eye on "BAM" bamboo clothing for offers. Tight weave cotton shirts [often men's can be quite good. And an umbrella over all of this. I have scarves and "buffs" for head and face with work wear glasses or if cooler a hoodie with baseball cap and buff over face - have to watch eyes though.

It isn;t always easy going out dressed so conspicuosly but it means i get out!

For me it affects whole body, like flu - but face will go red and flakey.

[Hobnobbing]

I got a plain white shir from a company called Rohan in a sale. It cost about £30 otherwise I could not have afforded it! It's handy to throw over most outfits and I imagine I'll get plenty of wear out of it!

[flo_IarFachYrHaf in reply to Hobnobbing]

I bought craghopper light weight sun protection trousers in a sale

[littleeffie]

Thanks Paul.

A is for Admin or is it secretly A team?

Love it when a plan comes together!

The Sun and lighting is a really big antagonist for me and for my son so really appreciate any extra and updated info.

[MandaM]

It's my eyes that really suffer, even with dark uv lenses I can struggle. light really hurts my eyes. I now can get a sort of temporary blindness with things going all grey and I can't focus even indoors. Sun burns deeply quickly.

[Paul_Howard Partner LUPUS UK in reply to MandaM]

Have you discussed this difficulty with your consultants? Did they have any recommendations?

[MandaM in reply to Paul_Howard]

Fell into the black hole in the hospital it would seem. Not had an opthalmolgist in many years. No one has ever recommended anything.

[Paul_Howard Partner LUPUS UK in reply to MandaM]

Could you discuss a new referral to ophthalmology with your GP or consultant?

[Hobnobbing]

Hi. I'm not sure if this will be helpful or not but I bought my shirt from a company called Rohan and they happen to have an online sale on at the minute. The shirts are quite pricey still but it might be worth a look. rohan.co.uk

I'm not affiliated with the company, I just get emails from them regularly now.

[Paul_Howard Partner LUPUS UK in reply to Hobnobbing]

Thank you for sharing you tip Hobnobbing