people 30 years old or younger

[ttdub]

I'm 20 years old and just wanted to see who is here that is under 30 years old because it really stinks to have this so yound and no one understand you. I just want to get to know someone with this disease who is around my age and see how you handle it.

[Shani]

Hiya! You've sent me a message not too long ago.I'm only 16 as you know, but you may always talk to me if there's anything.
Hugs and love.

[Madderakka]

I'm 26. I've had symptoms at least since I was 22, but wasn't diagnosed until I was 25. As far as handling it, I am trying to take better care of myself, eating healthier, trying to not stay up all night all the time etc. It kind of sucks having to deal with it so young, but all we can do is handle it the best we can.

[ttdub]

Hiya! You've sent me a message not too long ago.I'm only 16 as you know, but you may always talk to me if there's anything.
Hugs and love.

Thanks. I appreciate it. I think I'm just a little down right now because I just know that no one that I know understands even if I try to tell them what it's like. All they can say are things like, well take eye drops or maybe you should just sleep more or bla bla. It makes me so mad people can't just get it. I understand why. I don't know, sometimes I wish I had cancer so people would at least understand it's not good.

[ErinG]

I'm 30 and I've had symptoms since I was 19 or 20, and I was diagnosed when I was 28.  When I was in college no one understood why sometimes I couldn't go out bar hopping because I didn't have the energy.  It was hard to express what it felt like, especially since I didn't know anything was wrong with me.  Now that I'm older my close friends are very understanding, we all have our individual health problems and we take the time to listen to each other to try to understand it better.

Even as an adult it is difficult to explain when you choose to share your condition with someone.  I just started dating someone, for the first time in a long time, and if things continue to go well and it changes into a real relationship I don't know when or how to tell him about it. 

As far as handling this illness, I make sure to exercise whenever I can as long as I feel ok.  I'm pretty conscious of what I eat, getting enough sleep, using hot packs for pain when my joints hurt.

[shortstuff]

I'm 34 so I feel "young" enough to chime in.  I've had eye symptoms for at least 6 years and things went downhill after I had my 2nd child.  I'm sorry for anyone even younger than me to suffer from SjS.  All I can do is pray and be hopeful that maybe because we're young time will be on our side and we'll see better treatments In our lifetime.  It's kind of up to us to increase awareness and push for more research.

[sarajaane]

I'm 28 and pretty newly diagnosed. I don't think anyone around me understands. Sometimes I feel like I talk until I'm blue in the face. If I choose to go out then I lay on the couch for the next couple of days. Its really difficult to deal with. I just try to hold my head up high and go to work everyday. If I don't work then I can't afford medical care so its a no win situation. Hope this helps.

[tmarie0183]

I am 27 and diagnosed when I was 25.  Looking back first started noticing symptoms at 18.  It's been hard for me to accept and I am still grieving who I was and who I want to be, but then again I am thankful because I am here for my family.  Keep your head up and know that you are not alone!! Take care

[dreamBIG]

I'm 26 and am currently seeking the diagnosis of SS.  My definite problems started in 2008 when I was 24.  Looking back, I'm wondering if I had problems before then.  I understand being this young and feeling this bad.  I haven't found a husband yet, and it scares me to find a man that can accept this.

[eyeamdry]

There are a fair number of SJS's on here under 30 it looks like.  I guess no one needs to feel alone.  Lucy

[ttdub]

wow their are so many responses! That's not really a good thing though. I wanted to just say thanks for the responses. I'm sorry all of you have to go through this so young. If anyone needs anything at all just know I'm here to help anyone out. We have to be here for each other because others just don't understand. Hope everyone has a great day!

[Shani]

Surprised to see so many young adults that have responded to this aswell, but it's great to know that we are not alone!:)
Hugs to all, hope you have a wonderful day aswell hun.

[Dry1000]

Hey everyone

       I'm a 30 yr old male who was recently diagnosed, I have some advice for everyone who has it young. Go on plaquinol as soon as you can , because for me I had the dry mouth and eyes for 2 years and then I started feeling super tired all the time after 4 months of plaquinol I got my saliva back, i have taken on a second job and I feel almost normal again , my tongue is the only thing the still really bothers me. I feel that the plaquinol has restored my health and so far is keeping me pretty good. So if you can go on the plaquinol as soon as you can before major symptoms start. Good luck to everyone and I believe they will find a cure or better treatments for this disease in the next 5 - 10 years.