Lupus Awareness Month
“What?” I hear you cry October is Lupus Awareness Month?
May is Lupus Awareness Month. And yes you would be right but this is one of those moments when the UK like to be different.
You could argue of course that the more awareness the better. And this is certainly the case with an autoimmune condition such as Lupus.
So I thought I would mark the month by letting you know a bit about some recent research conducted by LUPUS UK. They discovered that the average time from the first symptoms presenting itself and finally getting a diagnosis was over seven years. Which means that many people with Lupus were just not getting the treatments they needed to lessen the impact of the main symptoms and to limit potential damage to the kidneys, heart, lungs or brain.
Elyssa a 22 year old Lupus patient commented “”When I was a child my face would present the butterfly-shaped rash whenever I was exposed to the sun. My family GP would prescribe Roc sunscreen and that was that. As I got older I experienced a lot of fatigue and would sleep upwards of 12 hours a day. My GP suggested this was the result of teenage hormones and diet. At 19 a lesion grew on my face which would itch, weep, bleed, scab and peel. In the course of two years I saw three different GPs who all dismissed my symptoms or just prescribed topical antibiotics. It wasn’t until I refused to leave the GP’s surgery that I was referred to the hospital and had a breakthrough. When I met my consultant I was soon diagnosed as having lupus. The lesion started to fade and calm after less than two weeks on medication, and whilst it has scarred, it is ten times better than it was.”
So LUPUS UK has started a campaign along side h the Primary Care Rheumatology Society and The Royal College of General Practitioners to raise awareness amongst Primary Care Doctors such as GPs.
Chris Maker , a director at LUPUS UK expressed his concern about PCP support saying ” we do expect GPs to have an open mind as we know that early diagnosis leads to a better prognosis in most cases”.
I have to say I found this comment very troubling. So I am hoping to get your view. It would be great if you could share your opinions on the following questions?
a) How long did it take you to get a diagnosis of Lupus?
b) How well briefed do you think your family doctor was about Lupus and helping you get a diagnosis?
It would be great if you could share your thoughts in the comments section below!
Thanks very much in advance.
