Am I the youngest person here with Sjogren's ??????

[momomom]

Everyone I have talked to so far is older. Is anyone else here in their 20's with this diagnosis? It scares me a bit that my symptoms are so severe and I am still this young. What will I be feeling like by the time I am 40? Will it just keep getting worse? I know Sjogren's can strike any age but it is more common in 40 and up. I would like to talk to someone around my age with SJ so I don't have to feel like such an anomaly (or someone who was diagnosed when they were in their late 20s to early 30s).

[ErinG]

I'm 29 and I was diagnosed a year ago.  I had symptoms for about 10 years prior to that, but I waited until I had insurance to pursue a diagnosis.  I think the disease progression is unique for each person, so it's hard to say how we will feel in 10 or 20 years.  I know I definitely feel better since I started my treatment, so I just need to be hopeful that things won't get worse.

[Epson]

I think most people get dxed in their 40s and 50s but had the disorder for a long time before the dx.  I also think a lot more men have it then what the medical profession realizes, because we don't go to the doctor until something needs to be sewn back on or we are regurgitating blood.

[Bernice]

Momomom,

Hey! You by no means are the youngest here, there are quite a few your age and even some kids, not sure how old the youngest is maybe somewhere around 5 or 6.

I was in my early 20s when I was first dxed, but I truely believe I had most of my childhood. I was always that one that was always sickly, spent most of my childhood in doctors offices.

It was after giving birth to my first child that I started having full body pains, especially my feet and joints at that time. I got that dx and went on with my life having two more kids and doing any and everything I wanted to do. I did not suffer with fatique or memory issues then.

It was so that I made up my mind that I was not going to let it get me down, shoot I recall saying "I don't have time for this". I went on being the most energenic person most knew, very hyper in my movements. Outworked most, always dancing, loved to get outside and run and play with kids and involved in something all the time UNTIL I reached early 40s, then the fatique set in and the FULL body, joint pains seemed to stay around.

I am thankful I had a good full life for many years even after being dxed over 25 years ago. I think for some once the dx is given the mind or will determines too many limits for the body. My suggestion is JUST LIVE! You will know when you need to rest or slow down, but just be determined to enjoy your life and you will be just fine!

[DragonflyC]

I have had symptoms since my teens and was officially diagnosed in my early 30s (I'm 34 now).  It can definitely be scary and frustrating to think of all the years ahead, especially when older people say thoughtless things like "Be glad you have your health now!" and "Wait until you're old like me!" and I just want to scream, "At least you got to wait until you were old to feel that way!  I'm achy and arthritic and exhausted NOW!!!"  Instead, I just remind myself that I'm lucky I at least look healthy to others (aside from my red eyes) and that there are worse things to have than Sjogren's.  

I focus on what I can control: taking meds, supplements (like fish oil), eating right, and getting lots of sleep (trying to make that a priority, but I'm a night owl by nature and have a job that gets me up early).  What I can't control, I try to push out of my mind by thinking, "Well, nothing I can do about that, so it isn't worth thinking about now."  

We can't know what's ahead.  They might find a cure (go, Dr. Faustman!!!) or new treatments.  The treatments we're taking might do their job and keep the disease from progressing.  The disease progress might plateau within our individual bodies.  And, yes, we might get worse.  Until that happens, though, I'm going to try my best not to think too much about that possibility.  

[babycakes]

hi there

i am a 38 yr old mum of one who was diagnosed with primary sjogrens when i was 35.  Although as others have said my symptoms were definately there when i was 21 or 22 maybe even earlier. 

Things got really bad when i had my son 2 years ago and my symptoms seemed to increase.  Coping with a new baby and being so ill was near impossible but i got through.  i am now on plaq and although it took a while to kick in i am so much better than i have been in years. 

Sometime things seem to have gotten worse and other things better.  i do have good and bad days but i can manage to look after my son just fine.  I think the worst thing for me was joint aches and the terrible fatigue.  Both of which are much better now.

It does seem that my disease is quite severe with many many symptoms but i am hoping i things wont get too much worse.

[inga]

I had 13 cavities filled on my 13th birthday!  I think I had this when very young, but back 40+ years ago, no one knew what this was.....you will do OK...plus, new things will be discovered about this disease, new treatments will emerge. 

[Epson]

I remember having dry eye as a fetus, now that's young.

[irish]

Inga, I had 11 cavities filled when I was 11 years old.  Can't say that it was from sjogrens but it was no fun.

Also, there is a young gal from England whose dad also posts here as does the daughter. She is about 10 or so and has had intravenous medication, etc. For the life of me I can't remember the name. Someone will come on and tell you. Irish

[jaygee]

You mean Elise , I think.  xx

[Scottietottie]

Hi 

I believe Elise joined when she was about 8 and we also had a four year old's mother who posted for a while. Both Elise and the 4 year old had a definite dx.

Take care - Scottie 

[amberjolie1]

I just got diagnosed a couple of months ago (I'm 34), but like many others here, I've had some symptoms for years.  I got a blood test done about 10 years ago or so because of fatigue, and the ANA came back positive and speckled, but because I wasn't showing any other definite symptoms, they didn't do anything (since some people can still get positive ANA without an AI condition).  So I wonder if technically I've had it for a long time, but it's been building.

[Patze]

Hi Scottie,

I think that you mean Jenna (I believe that she was diagnosed at 3 or when she just turned 4?)?  Yeah, her mom was on the board for a while, but haven't seen her around lately though.


Patze

[Pisces24]

Diagnosed means when they finally put a name on it or found it.  A person could have this for years before the drs even think to test for it.  The symptoms are sooo varied that you or drs think they are caused by something else or you just live with it because it is "normal" for you.

I had "female problems" all in my teens but hey it wasn't bothering me or causing problems. Then at age 21 I had a 2wk period, went in hospital and found out I had Hashimoto's (underactive thyroid).  I've found a lot of gals on this forum that have Hashimoto's too.
To be honest, I don't know how long I've had Sjogrens. I just know from my gp that my blood#s started being out of wack ca 1998 (age 41 then) and by 2003 they got bad enough to start my "journey for a smart dr". BUT (Now that I look back) I've had "odd" stuff happen prior to that waay back but gp just basically passed it off 
(like a 2wk 50/50 chance of keeping food on my stomach and once had a 2wk+ bout of severe muscle "cramps?" where I could hardly walk.  The muscle problem happened New Years Day 2000 and believe me I would have much rather been really snockered (I don't drink BTW) than had that. Leastwise I would have gotten over THAT a lot quicker. LOL   

So I guess we don't really know and from my experience with the specialists I've seen, they don't know either. Sigh!

[Billydude]

I think many of us had symptoms when we were younger but the medical field is catching up a bit and we went undiagnosed for many years.   I'm 52 but remember when I was a teenager and went to try out for contacts and was told that I couldn't wear them because my eyes were too dry.