Lupus Awareness

[lupylupus]

Hello,

Before I had this disease I knew very little about it. This applies to most people, including many medical professionals.

I fully acknowledge that in a lot of cases Lupus is 'an invisable illness'. Sometimes I don't completely wake up for hours after getting up, along with the usual symptoms, and it would be hard for anyone to understand other than those who might read this post.

However, I have now lost almost all my hair and eyebrows, and when I have a flare my skin erupts and I get red patches on my face that remain for ages, even when treatment steps up. (Not what a girl wants when the years are beginning to show anyway!!)

Although my hair is almost invisible the disease isn't!

We all know and feel for people who are seriously affected and when the disease become obvious.

My question is 'if we continue to describe Lupus as an 'invisible illness', are we describing the true picture?

Cancer is an invisible illness initially.

I often look on websites for hair peices and wigs, and it would be rare to see any mention of Lupus as a cause of hair loss.

I have no idea how else we can describe Lupus, but wondered if anyone on here could come up with any suggestions by doing a brainstorm. We might come up with slogan to make the public more aware and lead to more reasearch funding!

Just a thought!

Any ideas?

Margaret :O)

[Natura]

Interesting lupy....good points. My hair has thinned comsiderably. Even where you can see my scalp all along the front of my head. My hairdresser said to me. That comes along with age. Maybe? Are there that many people in their 50s with thinning hair? Maybe..

I seem to be heading in the direction of my female cousins whom have a few hairs on their head and bald everywhere else. I think i would rather shave my hair than look like that. I am somewhat sad about this. Always had a nice head of hair. Dont like wigs, but when i was looking there was mention of alopecia patients. Maybe better to say we have that for people to understand. My head is itchy and i have one scab so far.

Most people dont know what lupus is. People see you look fine on the outside. Even had my rheumatologist tell me that. Ha!

Treat yourself to a nice wig. I may someday too.

[Barnclown]

Great idea. I totally agree: there is lots that's visible about lupus, sjogrens and other connective tissue conditions. And I never call my condition invisible. My brain hasn't warmed up yet (it's so cold here in east Anglia this morning: finally after months of bizarrely warm weather), so no suggestions come to mind, but will follow the replies as they roll in!

🍀 Coco

[magSLE]

Hi, yes the way Lupus is basically described is frustrating as it affects each of us in different ways, this isn't really included. SLE has currently triggered 5 other health conditions (hope thats the lot) & some are not life-threatening but are debilitating. I look healthy on outside (although hair is thinning at front - I can wear hats in the colder mths & the occasional wig in warmer mths). My healthy exterior confuses my loved ones when I talk about the symptoms of relevant health conditions. They are literally blinded by their own ignorance. It used to be frustrating but I understand that they haven't accepted it, I have so I just get on with coping & doing what I need to so my health remains stable. It's been a confusing time but quite empowering as well.

Wishing you good stable health x

[lupylupus]

Thank you for your replies Natura, Coco and MagSLE,

I think we are in a grey area with this disease, but you never know, someone may come up with an inspirational way describing it. If nothing else it has got us connecting over an issue we all find frustrating but never get to discuss.

My symptoms have leaked into other health conditions too and as I have been like this for many years I have learned to read my symptoms. I can always tell when I have a cold on the way when the dreaded sjrogrens steps up a beat!

I have to wear a wig and sometimes I propel it across the bedroom in disgust, and then I pick it up feeling really grateful I can have one in the first place!

It's lovely to be able to connect with people who understand, and so please keep thinking about how best we can describe Lupus to others.

It would be so nice to be able to protect young people from getting this in the first place.

Have a good day, and it so nice to know that you are all out there somewhere!

Kindest wishes

Margaret ;O)