[natdurell]

Hi there,

I am Mum to a 10 year old daughter just diagnosed with SLE two days ago....I have spent the last 48 hours periodically bursting into tears and racked with guilt. I have Hashimoto's Thyroiditis and obviously this has contributed to Stef's illness. I have joined this site like others to find out more and become a little less terrified. I would dearly love to hear from any other parents of little ones in a similar position. I would like to thank everyone for being here and helping a couple of newbies like us

best wishes

Natalie (worried Mum) & Stef (age 10)

 

[goats]

Hello and welcome to the site, I am a older female and not much help for you and your daughter, there are parents on here that will come and help you out, sometimes it takes a bit of time for an answer ,as everyone is busy taking care of their children. there is a section with archives you can read for information and post questions, when you are reading ,remember that each lupus patient is different and there are new treatments be found everyday, great communication and support is very important for patients and caregivers

remember as a caregiver you need support also and you daughter would benifet to have someone that she can talk to freely about her feelings

Best wishes on both or your journies

 

[LolaLola]

Hello to both of you. I have Lupus and am Mum to Immi, 17, with Lupus. Obviously it is different for us as I know pretty well how Immi is feeling and she knows with me. If there is anything you want to ask or if you feel we can help in any way please let us know. And don't worry you will soon be pretty expert!
x Lola

 

[babs smith]

Hi Natalie, My son was diagnosed when he was 12 and I can remember feeling exactly like you are just now. Terrified and really emotional. He has been put on lots of medication and is going through a good spell just now. His illness can be very difficult to deal with as his mum and I just want to take his pain away. The main thing is to be positive for him and encourage him to talk about things when he is feeling low. I am new to this site too and like you think that it will be a great support to talk to other parents and share ideas on how best to cope so we are strong for our children.

 

[natdurell]

Thank you

Thank you to all who have replied We have today received a referral to a Professor or Rheumatology at GOSH in 12 days time....I seem to come across websites which either are extremely positive or seem to emphasise the absolute worst as the norm....goodness I feel so confused and scared. Just tell me that although the disease doesn't get easier, that the familiarity will somehow ease things a little?

 

[LolaLola]

Dear Nat, Honestly, you will be an expert at this in no time. Anyone here will tell you how much they have learned.
x Lola

 

[Clare.T]

Welcome!
The early days are always very anxious but as you acquire more information and know better what you are dealing with, it will certainly become easier to handle. There is no reason not to be optimistic because although young people tend to be more severely affected, they also respond better to treatment. Support from parents is an essential part of therapy, helping the youngsters adapt to the challenges the disease brings, encouraging them and maintaining their hope. It has to be very hard to maintain this and not let them sense your own misgivings.
So visit here for information and support when you need it.

Let us know how you get on - your own experiences will help others in turn.

All the very best

Clare