Hi my name is Mandi and I am 47. I live in the middle of the Ashdown Forest in Colemans Hatch with Glenn, our 13 year old son Jake, Border Collie Nell, cat Jasper, hamster Rufus and 2 chickens!!
I was first diagnosed with discoid lupus in my early 20's when I got a scaly patch on the top of my nose by my eye. I was referred to Lyle Street where the dermatologist saw that it was a discoid patch.
After loads of blood tests and biopsies this was confirmed. At the time it was very scary as the information available was very old and didn't really relate to my condition as it was mostly all about SLE. I was treated with steroid creams and not much else for a long time.
Over time the lesion on my nose spread down one side onto my cheek and became quite unsightly and I also began to get them on my ears and bottom eyelid. My left ear is the worst and I cannot wear an earring as it has eaten away part of the lobe. I also began to get bald patches on my scalp and some of my eyelashes fell out!!
Distressing is not the word!!
I also get aching joints when I have a flare up.
I was eventually referred to St Thomas's where I began to try all the anti-malarials but unfortunately I have an intolerance to quinine and they make me really sick. I have also been on prednisolone and did try Thalidomide but to no avail. The lupus unit is so supportive, informative
I have had steroid injections in my scalp (nice!) and some laser treatment which did calm it down on my head for a while but my funding was then taken away! I also have atrophy scarring on my arms which looks horrible due to long term steroid cream. The dermatologists have said I can no longer use it on my face as the skin is too thin!! I do however use sun block everyday under my make up.
We have been all over the world on holidays from Disney to Mauritius and I have never had a flare up as I wear a hat and use sun cream. I do get tires but then rest so it does not ruin my life!!
When I was younger I found it really hard to deal with and am still very self-concious about my hair loss. I am a whiz with the make-up and have found that MAC, Bobbi Brown and Bare Essentials minerals work fantastically well at covering it all up! If any one wants any help or tips then feel free to email me and if I can help I will!
I have a strong network of family and friends but they still find it hard to understand and when asked about it people still say ' Lupus - whats that?'
When my dad was a London taxi driver he would accost any consultant he picked up trying to find the miracle cure.
Sadly there isn't one yet.
Glenn is a huge support and doesn't notice, although he will let me know discreetly if my bald patch is showing! He never flinches at the amount of cosmetics I buy and thinks I should be a make-up artist as I am so good at disguising it now!
As I have got older I am more confident and will not be seen without my face on!! People ask me how I have the time but I have been doing it for so long that it is done in minutes.
My hair loss however is a different issue.
I used to have a problem with going to the hairdressers but now enjoy it. My local salon is very funky but they are all so sensitive and have asked about lupus and have helped me feel comfortable in the salon.
I also spend a lot on shampoos and conditioners that do not set my scalp off on a flare up. I would recommend anything natural without the chemicals. Neals Yard, Nioxin, Weleda and Aveda are great and at the moment I am using Tigi which appears to be fine.
If your hair looks nice and your make-up is good then you feel good and your your confidence soars. This is what I find anyway.
I love to go and have a make over and the make-up artist love it too as they enjoy seeing a confident happy customer leave their department loaded up!!
I spend a lot of time on anti biotics for infections and am at the moment into my 5th week of Azathioprine which after the initial queasiness seems to be settling down. So fingers crossed!!
Living with discoid lupus is a real pain! When my hair is falling out I panic and feel very self conscious, when my ears are infected it is uncomfortable and sore but that is how it is. I deal with it. When kids ask me what the patch on my nose is or why my hair is missing I tell them what it is. Spreading the word is what it is all about. Discoid Lupus does not rule my life!!
I have not worked for many years as I am a stay at home mum but have recently got into selling prints and limited editions on the charity fair circuit and I love it. I love to meet people and get out and about.
My son Jake is into acting and singing so I spend a lot of my time ferrying him about and chatting to lots of mums over a few lattes while waiting!
I have made some great friends through the Lupus unit and we all have a laugh and we seem to be able to find humour in most situations!!
Updated March 2010