Thank you Facebook Groups

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Taken from an online forum discussion last night re a Lacey Pattern appearing on people’s legs .

I know searching online for “issues / illnesses” etc can be a dangerous thing BUT since I became a Spoonie – The most important & informative & (to be completely honest) understanding & knowledgeable people, are those living with their own Spoon issues!

For 3 years my legs have (all of a sudden at any moment) presented with a dark red & purple, angry looking lacy pattern – similar to this.

6

After years of being told – it’s your fault – you’ve been having too hot baths, you’ve got high blood pressure – it may be that, you’ve been standing too long etc etc (all I may say, by different “specialists”) A young lady (in her early 20’s) in the USA enlightened me this morning via an online forum my “real me” visits every now & then…..

(Hence why I’ve removed my name etc from the pic).

This is livedo reticularis – A very real condition!

The funny (funny = annoying) thing is – Even if you look it up on NHS sites & other UK sites – It’s all played down – very much a non-illness, warm up a bit, it’ll get better!

On USA & NZ / Australasian sites, they treat their populace with more empathy & regard & give better descriptions & reasons….

ie:

nhs

Taken from NHS UK – Click for Link

Maybe that’s partly due to the UK’s attack on those who are disabled & ill at the moment?

– Just a thought X

Addendum – I have found one place in the UK that offers good info – THE PDCDS – Its a group founded by GP’s interested in Dermatological care. Funded by pharma companies it seems. BUT they have lots of info on there.

 

 

 

 

 

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One thought on “Thank you Facebook Groups

  1. I think it’s important to be proactive in finding answers, and if that means taking it to online groups to find information and hear other experiences, then that’s part of the process. I recently started noticing similar throughout my body, and when I went to one of my doctors, they said it had to do with blood vessels. I’m glad to hear you’re searching for and finding answers.

    Liked by 1 person

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