Parent's Account

[Clare.T]

It goes back to 1993, and is very poignant. A striking description of their efforts to be as well informed as possible in order to dialogue with the doctors and particpate in treatment choices for their child.

Makes one very aware of the value of the web. There are more options these days of medicines and protocols.

I hope we'll soon be able to say that all doctors have progressed in their knowledge and understanding of this disease and how to diagnose and treat it.

http://www.elef.rheumanet.org/newsletter/6/learning.htm

Wishing all Well

Clare

[zara]

Thank you, Clare. That is a wonderful story about being proactive.

It is scary, though, that her ANA was negative yet she had such severe kidney disease. :o

[here]

Clare,

This makes some good points for people dealing with lupus at all ages. I really like the statement that she was not in denial but defiance... nice twist to the "d" word.

Thanks

[Nell]

Clare,

Thanks much for that. Unfortunately my experience thus far has been exactly the same i.e. you as the parent can't possibly have any information or understanding of value. This is an empowering story! You have to demand your place at the decision making table and take it upon yourself to be as informed as possible.

I really want a copy of that book when it comes out! Cheers, Nell