anyone with a child with lupus or mixed connective tissue disease in Scotland or anywhere

[westlife1]

[MaryF]

Hi there, I am not in Scotland, but my children do, one has Hughes Syndrome, the other Hughes Syndrome and Systemic Lupus. If you need to ask me anything feel free to message me. Mary F x

[vijij in reply to MaryF]

Hi mary.what treatment your child taken for treat lypus and hughes syndrome?my daughter had too.

[MaryF in reply to vijij]

Well all the doctors keep an eye on my children's level of Vitamin D, B12 and iron, for the Hughes Syndrome/APS they are on Aspirin and for the Lupus, Plaquenil, the correct brand. MaryF

[MaryF]

Hi I am going to 'click' on our profile and do it via private message. We can have a conversation via that x MF

[solas]

Yes, I have a 12 year old daughter with lupus. We live in the North West of Scotland. I would be keen to hear from you.

[westlife1 in reply to solas]

hi Solas,

I would love to talk to you by phone if that was okay

[Zoezoe752]

I have had lupus since the age of 7 I am now 21 so if your daughter has any questions il b happy to answer them x

[beam]

Hi, I live in Forfar. I have lupus but I am 53. I am on the committee of South and East Lupus group. We have a young man in our group. Feel free to drop me a message.

[westlife1 in reply to beam]

beam

Thank you for replying dont know really where to start our journey has been over 5 years and doctor told us on Monday . Waiting to hear if they are away to start steroids . They have told me there is only a handful of children in Scotland with this. I would love to meet or chat on phone. Or to hear others symptomes .My daughter has had hip and joint pains, acid reflux, vision problems, numb feet, rashes , swelling, feeling sick , very tired ,malar rash on face ,dry eyes , photosensitive . Bleeding but we find out on thur is she also has von willibrand disease .

Kathleen

[beam in reply to westlife1]

Not so good. If you want to meet up and have a chat that would be good. My email is [e-mail]

Look forward to hearing from you.x

[westlife1]

hi Zoe

email is [e-mail] if you would like to talk. We have now been told she does have von willebrands blood disease