We want your stories for our blog!

We want your stories for our blog!

This year for our blog, we want to feature your stories each month. For January and February we're looking for people to share their story about dealing with a diagnosis of lupus. We'd love to hear stories from people with lupus and from their partners. If you'd like to share your story, please email it to paul@lupusuk.org.uk

One or two stories will be chosen for each month. Please send a photo of yourself along with your story.


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12 Replies

  • does that include those that have symptoms but not diagnosed?

  • I think for this topic we're looking more for how people deal with getting the diagnosis and what it means to them. If you want to write about your experiences and what you think a diagnosis would mean to you then it can be considered for the blog.

  • I can tell the awful story of how I eventually got diagnosed, and the relief of being believed. Not sure that's what you want, would be willing if so.

  • That sounds like the type of experience a lot of people have. I think it would be interesting for a lot of people to read your story if you'd like to share it.

  • Okie dokie, will do. Be in touch very soon.

  • Hello Paul....I would be interested in sharing my story!! Much like everyone else, it took a long time for me to be diagnosed, but was finally said to be a true 'luppie' in Feb 13.....and after the initial elation of finally being listened to, comes the realisation that it is for life, and very dangerous drugs are involved (am now waiting to see a liver specialist due to damage from Methotrexate despite following all doc's advice re blood tests etc!!! and I am TEE-Total!!)...BUT I am still hopeful that I will eventually be put on the right drugs for me. (at moment just on steroids-am seeing Rhuemy at end of this month to discuss where to go next with meds) Don't know how to post a pic-but willing to learn..if my story would help be the type of thing you are looking for I would be willing to take part. Julie

  • Hi barn1993, if you'd like to email your story and a picture to me at paul@lupusuk.org.uk then that would be great and it can definitely be considered for the blog. :)

  • Hello Paul. Can this include Discoid Lupus sufferers? Or us it only Systemic? Thank you.

  • Yes, it could absolutely include people with discoid lupus. Discoid lupus tends to be less common, so it would be really interesting to hear from somebody affected by it.

  • Paul,i did send you mine but it said you were out of the office until feb 17th.



  • Hi Paul, are some of these blogs already published? Where do we read them, is it on hear?

  • Hi roobarb. Yes, you can read the first one at;


    More will follow in the next couple of weeks.

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