urticaria Vaaculitis

[Anuanu2]

Hello everyone. Hope all is well. I have been diagnosed with Urticaria Vasculitis since 2022. I have just turned 30 and with youth spirit, I have been hoping that I would be back to normal like before I used to. Sadly it's already been 1.7 years, I used all my savings and this body not letting me work! Whenever I work for long hours 6+ or have sleepless nights the rushes come back with pain in the muscles, shortness of breath, red eyes etc. I needed help and support from the government. Please anyone who has the same diagnosis and claimed benefit, please share how it works. What do I need to do, where I should start the process?

Many tnx.

[eh66]

Sorry to hear about your problems. I can't help with your benefits issues, However there is always hope.

In my case, I was wheeled in hospital twice over a two week period and stayed in for about 7 nights; December 202 and 6 weeks off work. I could not walk, was in constant pain, blood blisters - some huge and infected, minor kidney damage, pink eyes, unable to sleep,m lost about 7kg etc. After two kidney biopsies, multiple autoimmune suppressant infusions, steroids etc I am now in remission and finished with the infusions and steroids. I eat very little processed and ultra-processed food, but much fruit, vegetables, fibre and fermented foods. Since then I have cycled over 10 thousand kilometers and can run 10K. So there is always hope.

You may find lifestyle changes improve your condition, especially if you figure out any triggers. Good luck

[Pickzie]

hi - so sorry to hear of your situation. I have had similar rashes but only when I’ve had exposure to UV (sun)light. My underlying conditions ( lupus, APS & sjorgrens) are kept under control with immunosuppressants under the care of a Rheumatologist. When I have had the rashes they have been managed by avoiding UV, strong antihistamines and topical steroids. I have managed to stay working over many years since diagnosed with lupus and so have no experience of claiming benefits. My story may not be helpful to you but the important thing for me was getting a rheumatologist, diagnosing an underlying condition and getting onto a medication regimen to control the underlying conditions. I hope you find a way to manage your situation and wish you well. X

[Mooka]

You could have a look at this website

Turn2us.org.uk

Or try the vasculitis U.K. helpline

[Budapest]

Hi Anuanu2,

Have you a Citizen's Advice Bureau near you?

They might be able to help regarding benefits.

[Anuanu2 in reply to Budapest]

Yes. I have sent an email. The waiting list is too long. Thinking of another citizen adviser that has an office and accepts drop in.

Tnx Budapest

[oldtimer2]

Are you in the UK? To start the process you would need to be signed off sick.

Have you an occupation health department at work? Asking them for help would be the next step - if it's a big enough business to have an occupational health department then they can make legally required adaptations for your disabilities. have a look here for what you might expect: acas.org.uk/reasonable-adju...

If it's a small business it's unlikely to help, but you are still entitled to help. Look here about statuatory sick pay. citizensadvice.org.uk/work/...

But worth making an appointment for citizens advice as you will need their help with finding out what you are entitled to, so make one asap. You will have to wait for one (they are understaffed for the workload, like all help agencies).