Hey , does anyone have Lupus and Von Willibrand's Disease out there

[Shinonz]

I was diagnosed with sle AND vwd - which is quite rare - and i havent met anyone like me before so i was wondering if there is anyone out there to help

[anbuma]

hello shinonz

what is VWD?

[Shinonz]

von willibrand's disease x

[esky]

Hi Shinoz

I am sorry i might not be of any help. I personally do not have von willebrands but have meet people with the condition as i used to work in the Haematology department at the main hospital in the region. If you contact the Haematology department they maybe able to advise you where you maybe able to get advice - even the PALS office maybe able to assist as alot of organisations do be in liason with them. Also lupus uk maybe able to point u in the direction of help. Hope this helps. Best wishes x

[westlife1]

Hi I noticed your post my daughter is 14 yrs old and is under investigation for lupus or mixed connective tissue but because of her age they aren't sure , she has alot of symptoms and her ana have been 1.640 for yrs . But she does have von willibrand which was only diagnosed 30th may this yr. I would love to hear from you .

[Shinonz in reply to westlife1]

Hello , i was undiagnosed but i still suffer from the symptoms of lupus , just keep pushing with the doctors thats what i did and i finally after 2 years got a diagnosis xx

[westlife1 in reply to Shinonz]

Hi my email is [e-mail] to speak more about von willibrands x