Project

[Tivia]

Hi I am pretty new to this also, dx'd in september '12. I am like you trying to find out what will happen, which is what I think you are also looking for the answer to. The future is scary and not so open anymore, I was an active person, not so much now. I want to push through it all, but when I do I feel worse, then I get mad because I wont be able to do things like I used to.

Its hard to accept a life altering illness, esp one that the outcomes are so variable. You see everything from people with only very mild disease, to people that are dying from it in rare cases. Its frightening this unknown, and not being able to be 100% reassured by our doctors that...no you wont ever get that bad. All you can do is live in the moment, your body will tell you what you are capable of. I went two weeks almost normal again, this morning I woke up to the disease...again.

No one knows what course it will take for them, and that is the most frustrating and scary thing about AI illnesses. What is a minor annoyance for some can be a medical nightmare for others. In the end we all would like to know...hey Doc how bad will this get really?

[Scottietottie]

Hi Tivia

Good answer. That is exactly why we have to take each day one at a time and get the most out of life that we can - because we only get one life.

Easier said than done but there is no point stressing about what may happen because it may not - and stress makes SjS worse anyway - or at least it makes it flare.

Take care - Scottie 

[Dolly Dimples]

 Ive always said , We have to live it , it's the only life we have !
                                         Dolly

[LisaMarie]

Find a doctor who is willing to treat symptoms and not too worried about an official diagnosis. 

Don't be afraid of anti-depressants.  They will help you get through the battle if needed.

Look at your diet and make improvements there.

Be patient with the process.  Some new medications may take awhile to work.  I mean a long time.  It may take experimenting with doses and timing to get through the side effects.

Find a support system.  I don't think I would have made it through the big flare without this board.

[quietdynamics]

I would first "listen" to them.

Then let them know that SJS can have mild symptoms to more severe, and "NOT" to assume they will present with the more severe, but to be aware and keep a diary. And to keep their Dr. aware of changes, as it is the symptoms which are treated. Keep copies of all blood work/tests.

I would give them this link from SJS Foundation which explains SJS
http://vimeo.com/16671907

And let them know I am here for support.