Help us update our "Lupus and the Skin" booklet

[Debbie_kinsey]

Help us update our “Lupus and the Skin” information booklet to ensure it meets the needs of all people with lupus by telling us what you think about our current booklet. You can read our article on what we’re doing here: lupusuk.org.uk/help-us-upda...

Or jump straight into some prompt questions on our survey here: forms.gle/QpEoP3h9p35XMCaR7

Any questions, or to give feedback directly, contact Debbie on [e-mail] or 01708 731251.

Thank you for your help!

[Krazykat26]

The link isn't working for me Debbie 💜🌈xx

[Debbie_kinsey Administrator LUPUS UK in reply to Krazykat26]

Hi, thanks for letting me know! For some reason it's not letting me edit the post at the moment, so I'll try again later. For the time being, this is the link to the article - lupusuk.org.uk/help-us-upda...

The survey link is working for me, but let me know if that one's not working for you either.

[Lizard28]

Sorry Debbie, won’t let me open the booklet.

[Debbie_kinsey Administrator LUPUS UK in reply to Lizard28]

Sorry it's not working for you! The article link in the post isn't working & it's not letting me update it at the moment. I'll try again later, but this should be the correct link: lupusuk.org.uk/help-us-upda...

If you mean the link to the booklet within the article itself, then it may be because it links directly to the PDF. You can also find the downloadable booklet at the bottom of our publications page here: lupusuk.org.uk/publications/

If you're still having trouble, let me know and I can post you a copy instead.

[Betty909090]

Hi,

It seems the new booklet link gives an “OOPS error, 404” and is not available. However the old one is still listed in the “Publications” section of this website!

Perhaps it may work for others?

Regards

[Debbie_kinsey Administrator LUPUS UK in reply to Betty909090]

Hi, sorry about the link confusion! HealthUnlocked isn't letting me update my post. The new booklet hasn't been created yet, so this stage is getting feedback on the current/old one to see what we need to do for the new one. The article with more details is on this link (which is the one broken in the post): lupusuk.org.uk/help-us-upda...

[Turquoise-1]

Hi Debbie_kinsey

The 1st link didn’t work at all for me, the 2nd one took me to the ‘Lupus and the Skin” booklet. 🙃

[Debbie_kinsey Administrator LUPUS UK in reply to Turquoise-1]

Hi, sorry about the broken link, HealthUnlocked isn't letting me edit my post at the moment. In case one of the others in the article is broken for you, these should be all the relevant links:

- Article explaining what we're doing: lupusuk.org.uk/help-us-upda...

- Survey where you can give your feedback (though you are also welcome to email me instead): docs.google.com/forms/d/e/1...

- Link to the current/old "Lupus and the Skin" booklet if you don't already have a copy: lupusuk.org.uk/wp-content/u...

Let me know if any of those aren't working for you, apologies again!

Debbie

[Turquoise-1 in reply to Debbie_kinsey]

Hi Debbie,

I’ve now completed the survey thanks.

I easily accessed it via the link on your previous post 🙂 ….. the wonderful world of technology 😂 😵‍💫

[Debbie_kinsey Administrator LUPUS UK in reply to Turquoise-1]

Awesome, thank you. Yes, the wonderful world of technology!

[Betty909090]

Hi Debbie,

Thanks for posting. Have read the revised booklet.

Here are a few of my initial 👍s and 👎s.

Trust you don’t mind?

❤️👍The colourful electromagnet wavelength chart. Different types of uv light (A, B & C) are important to know about particularly for sunglasses, apparel, sun screen and home lighting.

👎 the cursory reference to Ro and Anti-Ro. More needs to be said because it’s often associated with Sjögren's Syndrome (Anti-SSA)via:

en.wikipedia.org/wiki/Anti-...

Ro itself? What are these molecules? Anti-Ro? Perhaps these sentences could be better explained?

👎 Hydroxychloroquine retinal toxicity is underplayed as a side effect. IDK that HCQ is very popular with prescribing dermatologists and rheumatologists but the ROYAL COLLEGE of Ophthalmologists have said the risks have been underestimated! Many on here have said they’ve suffered HCQ irreversibly induced retinopathy (myself included) perhaps due to not being monitored properly and regularly? The importance of medical department liaison should be emphasised.

👎The actual references from dermatology are old, 1996, 1997? There must be more recent references for lupus and photosensitivity. (See Sontheimer 96/97 ref lupus and skin).

👎the booklet gives 2 dates: 2012 and 2015? Which one is correct? Will it be ready for 2023?

👍/👎the old booklet combined hair loss with skin and said alopecia (autoimmune hair loss) occurs with lupus but hair grows back once lupus is well controlled/managed but there is nothing about hair loss in the proposed new one? Hair follicles are an integral part of skin.

Regards

[Debbie_kinsey Administrator LUPUS UK in reply to Betty909090]

Thank you for taking the time to give your feedback Betty909090, I'll add it to the survey responses. Much appreciated, Debbie

[maggielee]

Have sent you an email with comments... ML