newly diagnosed 15yr girl

[stuartmacleod]

Hi,
My names Stuart and my daughter has recently been diagnosed with having lupus, in 2003 she was diagnosed with rheumatic fever but the systems are so similiar it was mis diagnosed. We live in essex and wish to meet people in the same position as ourselves if possible
email address stuart.macleod@networking2000.biz:sad:

[goats]

Hello ,and welcome to the site, there is a under 20 section if your daughter would like to check it out, there are other parents with children and children that visit here also
I am a grandparent with lupus from canada
I hope you are your daughter find the site, informative and supportive as I do.
you might wish to pop into the chat room and chat with other people that have lupus and family members. under family and friends there are also articules that you might find informative
best wishes for you and your daughter

[Dee Fellows]

I am sorry to hear of your daughters diagnosis...I of course would not wish this on anyone, especially a teenage girl. BUT, that being said, it sounds as if she already has a good support system in place. That will be very helpful to your daughter. It is great that you have reached out to find everyone and everything available to your child. This is a wonderful site filled with great people and great information. We are here to support you and your daughter. Education is key. Educate yourself and your daughter and do everything you can for her. The earlier things get keyed in and she gets hooked up with a great rheumetologist, with your support she should be able to be a happy 15 year old as she should be.
Welcome to a wonderful world of people and knowledge.
Best of luck to you and your daughter.
SHe is a lucky girl.
Ur friend
Dee

[stuartmacleod]

Many thanks for your kind words, ill look in the under 20's room and try to some teenagers with similiar problems
again thansk very much i can see this site is going to be alot of use to my daughter and ourselves

[Clare.T]

Welcome to the Forum Stuart

I am very sorry about your daughter's diagnosis. Dealing with a child with a chronic illness must be the greatest possible challenge of parenthood especially in the teen years when the relationship can be tricky at the best of times.

The psycho-social aspect of lupus in teens is just a crucial to well being as the treatment is to symptoms

I moved your post here because it is more likely to be seen. We don't have many regular members who are parenting children with lupus, I don't know why, as there are plenty of you out there.

The medicines used are the same as those used for adults so you can certainly get a great deal of useful information. Everything else is much the same too as regards symptoms and diagnosis. Since you are her representative you need to be as well informed, perhaps even more so, as you would be for yourself. Ask for test results so you can learn what they are all about and so you can question the doctors and be well informed enough to enter into a partnership with them. Good doctors appreciate well informed patients and carers.

It is very important that your daughter feels comfortable with her rheumatologist as well as you all feeling your concerns are being taken seriously and knowing she is getting the best possible treatment.

We have quite a few members from Essex who might be helpful for comments about local lupus care facilities. There is also the LupusUK Area Support Group.

It is not uncommon from people from areas outside London to go to London for care if need be. Great Ormonde Street provides pediatric rheumatology in some cases. I suppose that's up to age 16, although I do know that St Thomas takes some patients in their mid teens.

Please don't hesitate to ask - if we can help you in any way we will be happy to do so

With all best wishes to you and your daughter.

Bye for now

Clare

[StevieM]

Hi Stuart,

I am the mother of a 12yr old girl who was diagnosed with SLE in March 2005. We live in Berkshire and I would be happy to chat with you anytime, feel free to email or PM me (email address is available through the site).

Best wishes,

Stephanie :)

[AngeK]

Hi Stuart,

I'm 23 and was recently diagnosed with Lupus, I live in Hornchurch, Essex. This is a great site and I know there are some other people on here who are also from Essex. Where abouts in Essex are you?

Lupus UK can give you more info on support groups etc,
http://www.lupusuk.org.uk/ You can also join Lupus UK and recieve a regular magazine and more info, I think this is £8 for a single membership.

Feel free to PM me.

Angela.