I have been diagnosed with SLE for 26 years now (Lucky I know to have a diagnosis so many years ago)
I have had all the manefestations over the years and all the drugs.
When I had my daughter 7 years ago we asked if she could be tested for SLE and were told only if she had sysmptons.
Over the past three years she has started getting rashes in the sun! as you can imagine my alarm bells went off.
My husband tells me Im being paranoid but he didnt live his childhood covered in itchy red rashes every time the sun came out as I did.
Should I get her tested so we know what we are deling with? Help?
Written by
Paula1968
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2 Replies
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If your daughter's rash is a typical butterfly rash on the face - ABSOLUTELY get her tested. Why should she suffer when there is help available? Lupus is no different than any other chronic disease. It requires ongoing treatment and care from medical professionals. Do not deny your daughter proper attention to this matter. If it is lupus and goes untreated permanent harm may occur. The next time she has a rash get her tested. Do it for her and for peace of mind. It may be nothing. Best to be certain.
Hi there,my daughter has sle and is being tested for vasculitis,RA,ms,she is 26 but had been unwell with bowel,brittle asthma,allergies etc since she was a baby,sometimes she would have to lay on the sofa and watch the world,her friends and siblings go by because no matter what we did,all we ever heard is ,well she looks ok today! I hated all the consultants she saw as a child,useless. is all i will say!she was finally dxd 6 months ago with sle,has to take many meds a day,which have made her feel loads better,she is still on the treadmill going to different specialists to see what other severe disease is being missed,but her twin 3 year old daughters have just had lots of blood taken to be tested,my daughter has had so much going on herself health wise that she is unsure at the min exactly how lupus or other autoimmune diseases can be detected in the bloodThe twins suffer from asthma, hayfever excema? Water infections,one has had very high potassium levels in her blood,which were ok in there last blood test,the other always has high inflammatory markers in her blood,but no one knows why,she also could sleep for England,so we are not sure if she has fatigue or is just a lazy little thing,ha ha.I hope you get some answers,for your daughter,my daughter felt the same she would not want her twins going through what she did for 26 years.Good luck.Sandy
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