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).
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.
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.
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!
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.
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.
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.
I remember having dry eye as a fetus, now that's young.
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 ;D
You mean Elise , I think. xx
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 :)
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.
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
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! :-\
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.
Quote from: ErinG on February 19, 2010, 08:21:04 AM
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.
Cool, we are the same age. How long have you been on treatment? What do you take? I don't feel better yet from my meds but it has only been 3 weeks. I am so impatient and I am tired of feeling/looking like crap. How long did it take for you to start feeling better?
Quote from: inga on February 19, 2010, 09:32:49 AM
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.
LOL! Sounds just like me. I have had soooooooooooooo many cavities! I always took really good care of them but it didn't matter. I am positive i have had this since i was a child. I know I have had the symptoms since I was a child. I always had chronic fatigue, aches and pains, and I was sick more often than I was well. I had bronchitis monthly, Pneumonia at least 5 times a year, ear infections constantly, strep all the time, asthma attacks all the time, tons of allergies (environmental not food), I was always anemic and covered with bruises from nothing. The list goes on and on.
I really feel for the kids with Sjogren's because nobody listens to them and it's so much harder for them to explain what they are feeling. I am already seeing the same symptoms in my kids. I will just wait and see for now but I have made their pediatrician aware of the possibilty. They are probably going to do some testing on them soon.
Quote from: DragonflyC on February 19, 2010, 08:43:24 AM
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.
Yeah I hate it when people don't understand. I get annoyed when people complain about little petty health issues or colds too, especially my family. They don't understand how hard it is. My mom used to think I was lazy. When I would say "I am so tired" I would often hear in response "oh yeah, me too". Or if I said I felt so achy and terrible people acted like it was no big deal. " I don't feel good" is such a generality. It's hard to make people understand just how bad you really feel and how hard it is to simply function. I try to explain it others as " Imagine you have a really bad flu with fever, aches,chills, fatigue, confusion, blurry dry itchy eyes.............now imagine that flu NEVER goes away". That explanation usually helps me clarify. My family gets it now I think, or at least they don't complain as much about their own health probs in front of anymore lol!
So I guess I'm not so unusual after all. Quite a few people here below the mean age. You know I can't help but wonder............ WHAT do we ALL have in common that could help us figure out why we all have Sjogren's (or other manifestations of autoimmune attacks)? I spend a lot of time just analyzing the whole thing trying to come up with a universal explanation. There are some good theories but still I wonder. I really hope a cure is discovered or at least a cause in my lifetime. I know my mind won't let me stop trying to figure it out.
AI diseases are likely partly genetic and partly environmental (i.e., we have the gene, but something--stress, a virus, etc.--needs to switch it on). SJS is especially common in people of northern European descent, but that doesn't mean that only those people get it, of course. Having others with AI diseases in your family makes you more likely to get one, though not necessarily the same one.
I just turned 30 this past week and got diagnosed at 26 or 27. Bruises, fatigue, dry eyes were the worst. Give the plaq time- I was falling asleep at work and I dont' have that issue anymore. It just needs time to build up in your system (for most people). I fear what the future holds for me, but in the same thought, there isn't anything I can do about it so I just have to keep chugging along and make the best of it for my family and myself. I hope it doesn't get worse, but I know inevitably it will.
I am hoping that you younger women will feel better than I do at my age, which is 57. There are so many things I would have NOT done, as well as done, had I known I had AI disease brewing. I think knowing helps you take better care of yourself. I burned the candle at both ends.
Also, I hope that medical science will discover what causes this soon, so you can have a better quality of life.
I chastised myself my entire life for not being energetic enough....(I raised 3/4 dozen kids, 4 of them special need adoptions, and while working as a nurse.) If I knew I was sick....well....whatever...it's done and gone. I want to make it to social security, so I can be a pain in the butt to you guys, lol...(just kidding...I don't want to burden any one.) I have 4 working daughters, in your ages ranges, and I don't want to see them burdened either.
Take care of yourselves, and don't burn the candle at both ends.
Hi
I was diagnosed in January at the age of 30. I myself am still trying to come to terms with it but this site is great ! I don't have much to say but just wanted to say hang in there and make sure you have a doctor who will really be patient and explain things to you.
All the best ! :)
Quote from: kimboloco on February 20, 2010, 07:58:34 PM
I just turned 30 this past week and got diagnosed at 26 or 27. Bruises, fatigue, dry eyes were the worst. Give the plaq time- I was falling asleep at work and I dont' have that issue anymore. It just needs time to build up in your system (for most people). I fear what the future holds for me, but in the same thought, there isn't anything I can do about it so I just have to keep chugging along and make the best of it for my family and myself. I hope it doesn't get worse, but I know inevitably it will.
How long did the Plaq. take? Are your eyes any better? Are there any other meds that helped you? If so I will mention them to my doctor. I just push myself every day as hard as I can to just do normal things. It's so exhausting. I fantasize about how it must feel to be "normal", how it must feel to not have to push yourself. I just want to experience what it feels like to not feel sick every day. At least the pursuit of feeling better keeps me going.
Plaquenil can take a month or two to kick in; most people take 200 mg twice a day (regardless of body size or gender). It mostly helps with fatigue and aches/pains. A lot of doctors will start a patient on a low course of prednisone for a few weeks to help until the plaquenil gets working (I took 5 mg. of prednisone for two weeks when I started my treatment; I do the same thing when I have a flare).
Evoxac and salagen both stimulate salivary flow. I take evoxac three times a day. My dry mouth isn't too bad, but my rheum wants to help me avoid dental issues and blocked glands.
Restasis helps some people have greater tear flow. I'm not seeing a big impact, but I use it twice a day as directed anyway.
Fish oil supplements, flax seed oil, and the like are helpful to many people, especially those with arthritic symptoms.
Some people here can push themselves without serious consequences (I can to a point when I'm not flaring, but then I crash hard the minute I get a break); some get much sicker when they push their limits. Make sure that you stay aware of how you are feeling so that you can figure out how much is too much for you.
Starting on medication may make a huge difference for you. Some people feel normal or nearly normal after a few weeks. Some people, however, continue to have problems. I'm basically OK, but I get tired easily and quickly and have a lot of aches and pains. It's my new normal, so I deal with it. It makes me sad sometimes, but I try not to let it get me down too often.
Momomom,
I think I started most of my meds in February or March 2009. It's hard to say which one made me feel better because I started so many in a short period of time. At that point I had already had punctal plugs in both eyes and I had been on Restasis for a couple of years, so my eyes weren't feeling that bad when I started plaquenil.
I started prednisone after I had a kidney biopsy in March to determine what was causing my low kidney function (aha! interstitial nephritis from Sjogren's). Everything immediately felt better, I drooled in my sleep, and I was sweating all the time, as opposed to never. I'm on a much lower dose now, and my mouth still has a lot more moisture than it did before so I think plaquenil has helped with this, too.
Do I look and feel like a million bucks? No way, but I feel better than before. It's hard to feel great after gaining 45 prednisone pounds! I'm working my way down, I've lost 11lbs since the beginning of the year.
Just an FYI that a low dose of prednisone doesn't cause weight gain. Sometimes people need a larger dose, like Erin G., which certainly can have a lot of side effects. A low dose of 5 mg. (or 10 or 15--not sure where the upper limit is, but those are still low) doesn't cause any problems for most people.
I am 32 & was diagnosed 2 years ago. I am fairly certain from symptoms and old blood tests indicating I had low white blood cell count that I had it since in junior high. I have the same concerns that you have though. I may not have any answers for you, but there are definitely people here who can empathize with you:)
Quote from: Johnson on February 22, 2010, 02:49:35 PM
I am 32 & was diagnosed 2 years ago. I am fairly certain from symptoms and old blood tests indicating I had low white blood cell count that I had it since in junior high. I have the same concerns that you have though. I may not have any answers for you, but there are definitely people here who can empathize with you:)
Every time I have had blood tests they said my white blood cell count was very low, even when I was a child. I always asked the doctors why and they would just shrug their shoulders and change the subject. I always asked my mom why I was sick all the time. I wished that i could go play outside with the other kids that NEVER seemed to get sick. My voyage to this recent diagnosis has been absolutely frustrating and ridiculous. I was ignored by doctors my whole life. Everyone dismissed my concerns. I even had a doctor tell me it was all in my head. I had a dermatologist tell me that i am just getting old (at 28). How freaking hard is it to do a simple series of blood tests? It took a minute to draw my blood and a day of waiting for results that clearly diagnosed me with Sjogren's and a lot of deficiencies.
I plan to write a letter to the jerk of a doctor who told me it was in my head (Dr. Abdo). I think it would be cathartic for me and quite empowering. This group has been great for me. Everyone really does understand. I relate to so many of the stories I read here and I empathize as well.
I was just the opposite, I hardly ever got sick as a child. My sister and brother always had ear infections, strep, ect., but I rarely got sick.
I'm 22 years old... I've recently been diagnosed with sjogrens... I'm feeling pretty lost on how to cope. And it's been extremely difficult trying to finish out this last semester of college... I'll be graduating in December... hopefully
My SS probably started at birth. I was finally diagnosed in my teen's, and finding a good rheumy is the most important thing.
I started plaquenil and for many, many, years, it was manageable pretty much. I had a normal life. It really wasn't until I had a hysterectomy and then my hormones went crazy causing me to be in constant flare.
Don't worry about your age etc. There are a lot of people who's symptoms that aren't as severe either. I would highly recommend
getting on plaquenil and just staying on it. It will help prevent future damage in my opinion.
good luck..don't fret!!
Gursie
Hang in there! It sucks to get through school with this. You can do it, though. I am there, too. Pace yourself and just say no to everything but the bare necessities. Thankfully you're almost done! Tell your doctor that you're struggling to make it through the semester and ask for help. Plaquenil helps lots of people but it may not kick in fast enough to help with this semester. Good luck!
I was 28 when symptoms started, started losing teeth about 5 years later, had my entire pup teeth removed at age 39. I am now 41. I was diagnosed just after my 40th birthday, yay me. But I had been seeking dr care since 2002 ( age 29) when the joint pain started. I didn't have Drs that really took time and listened then.
It can really depend on the person how fast it progresses. Everyone is so different. I'm sorry you are young and getting diagnosed but, now you can get treatment.
That's *upper not pup. Typing too fast on my phone. Lol
Hi sbw32wooten :)
Welcome to Sjogren's world. I think the youngest sjoggie we had in here, who posted, was 9. We also had the mother of a 4 year old. It seems that it can strike at any age although later is more common.
I'm sorry that you have it but you've come to the right place. People in here are friendly and supportive and knowledgeable.
Take care - Scottie :)
I just wanted to tell you that you're certainly not alone. I was diagnosed at 24, and I just turned 27. I was ill and seeking a diagnosis for many years prior to that. I also have severe symptoms, unfortunately. I will receive my first infusion of Rituxan this month.
Newbie..so sorry. Doc thinks I was actually born with this. When I was born, I had pneumonia, after that, my mom said I slept all the time? I remember in grade school/middle/high school that I constantly had my head on my desk and was just super fatigued. I really struggled. I also had stomach issues like gastroparesis way back then. After puberty, things got really bad with the dryness etc and then the cavities..was referred to a rheumy who diagnosed me with Sjogrens. All my female cousins on one side of family have some form of autoimmune. I believe we have this faulty gene, and then it gets trigged by something. A hysterectomy 8 years ago really did me in. It made me 100% worse. Hormone balance is a biggie.
I hope the rituxan works great for you..what type of symptoms are you having?
hang in there
Gursie
I think there are two different modalities here:
1. There is a specific diagnosable autoimmune condition that is Sjogren's Syndrome, which involves both physical symptoms and specific blood markers and other physical tests.
2. There is what I call a generalized immune disorder which involves a host of illnesses, fatigue, depression, pain, and for many of us started at birth, or infancy, early childhood, or any other part of our lives.
Some of us have both. And Sjogren's can be the start of a more generalized immune disorder, which brings in additional autoimmune conditions as well as Immune Deficiency, and the host of co-conditions (anemia, Raynaud's, etc).
What amazes me is that when a study was done of a large group of elderly Japanese patients with peripheral neuropathy HALF OF THEM were found to have undiagnosed Sjogren's. They had the blood markers for Sjogren's, but had never complained enough, nor been tested before. That astounds me. Clearly the testing for Sjogren's is not done often enough.
All of these things are part of basic immune mediated disorders which arise from a misfunctioning/malfunctioning of our immune system.
Hugs, Elaine
@ Patze - I think Jenna's Mom went and founded a Facebook Sjogren's page. :)
I have been crazy since last 6 months. Because i have developed the following symptoms gradually.
dry eyes (which progressed from normal 14/15 to severe 5/15 in a matter of 5 months)
dry mouth (has progressed from normal to dry mouth at night.....and mild dryness around lips during day time)
dry nasal passage
fatigue (for about 30% of my days during first 3 months)
one small gumboil just 1mm in size has neither increased not decreased in last 6 months.
All blood tests normal (SSA,SSB,ANA,ESR,CRP etc) only vit-d and vit-b12 were low.
Every doctor i have met (opthalmologist, dentist, rhumetologist) all say that i do not have sjogrens, but cannot explain why have i developed all these symptoms in a span of just 2 months after 40 years of healthy life. None of them have given me an alternate theory of what disease am i having, which can cause these many symptoms.
I think that most of the sjogren patients actually have the disease onset about 5 to 10 years before any major symptoms shows up....because most of the medical books say that this is "very slow progressing disease"
so if a patient has atleast 3 of these 5 symptoms dry-eyes/dry-mouth/dry-nose/fatigue/insomnia should assume they are sjogren-suspect, and they must closely monitor the newly emerging symptoms if they fit in the huge laundry list of sjogren symptoms.
I think the current blood tests and other investigations have poor specificity and poor sensitivity to rule-in or rule-out sjogrens. So as custodians of our only body that we have, we must stay paranoid and become highly observant of our body.
You're probably not the youngest person here I'm envious you got your diagnosis in your twenties. I've had this disease my whole life. My mom took me took the doctor when I was a baby because of my tear production. Around 5 yrs old, I was having issues with the sun. I had crumbling teeth since my permanent ones came in. I wasn't diagnosed with Sjogren's until my early 50's. I got some bad news from my neurologist yesterday and this morning I broke down to my husband saying, "I know I always say this but why didn't any doctor catch this sooner? If they did, the progression coils have been slowed and I wouldn't be in such terrible condition". The earlier your diagnosis the better. ????
Do remember my fellow "young sjoggies", there is an under 40's SS group run by my friend Paula.
If you would like to connect with her, she can be reached below. It is not just for NY. She does a neat SKYPE type meeting periodically and they get together at SS Patient conference each year.
For the rest of us..well we know we are 20 in our head it's just that our bodies don't agree. :-\
New York City Area "20s & 30s" with Sjögren's
Support Group Leader:
Paula Sosin
Contact Information:
(301) 538-3422
Cheers!
SjoDry
SBW posted her query "am I the youngest" years ago. Never joined or posted again under that name. But the panic in her post triggered the memory of my first few days after dx. I was not expecting a dx, I didn't WANT a dx, and I certainly never dreamed a dx for a condition I would never have heard of. I never dreamed any impact of a disease could hit me as hard as that SjS dx. I recall sitting in my house...no TV, no lights, no music, didn't answer the phone...for three days. When I snapped out of it, I thought "how long have I been here, when did I eat last?" I was suffering burning tongue/mouth so I would so for days without eating as everything hurt my mouth. I was still working contract work, but it was Christmas holidays.
When I realized it had only been three days, I started to laugh. But the feelings she expressed, I remember vividly. I'm close to 4 years since dx, and really, the aggravations of "one more condition" have just now ceased my just stopping in my tracks and not screaming.
c3
Hi. I too have had symptoms of Sjögren's and hypothyroidism for much of my life. I had loads of dental problems as a child, dry eyes as far back as I can recall and total alopecia age 9-11 and again post gestationally after having each of my kids. My youngest was born with a butterfly rash across his face which no one could explain. I'm seronegative, was previously misdiagnosed with RA and later thought to have MS by several doctors. Last year, with +ANA and high IgA and IgG and always high fluctuating Sed rate and CRP - I had a lip biopsy which showed 100% positive. It does get to me a lot as a disease just now and I'm on the highest dose of Cellcept for it. But as others have said to you - I think Sjögren's is the least understood rheumatic disease and I come across many young people on autoimmune forums, including young men, who can't get doctors to take their possible Sjögren's symptoms seriously merely because of their age. So I believe the age and gender info given out could well be very misleading. I know I've had autoimmunity for most of my life. It hasn't stopped me from living my life very well and productively until quite recently though.
Quote from: momomom on February 20, 2010, 02:08:49 PM
So I guess I'm not so unusual after all. Quite a few people here below the mean age. You know I can't help but wonder............ WHAT do we ALL have in common that could help us figure out why we all have Sjogren's (or other manifestations of autoimmune attacks)? I spend a lot of time just analyzing the whole thing trying to come up with a universal explanation. There are some good theories but still I wonder. I really hope a cure is discovered or at least a cause in my lifetime. I know my mind won't let me stop trying to figure it out.
That's a good question that I think about all the time. As a child I would be sick all the time and I was tired all the time to the point my family swore I must have had mono. Meanwhile my twin sister is at the peak of health.
Quote from: sbw32wooten on October 06, 2014, 01:02:15 AM
I'm 22 years old... I've recently been diagnosed with sjogrens... I'm feeling pretty lost on how to cope. And it's been extremely difficult trying to finish out this last semester of college... I'll be graduating in December... hopefully
I highly recommend signing up with your schools office of disability to get some extra time on assignments and have your assignments and exams spaced out.
I'm 22 and was diagnosed at 19 during my sophomore year of college and I know just how hard trying to make it through college with this can be. I've found that you sorta need to just accept that you have a lousy disease and that being sad for yourself will only make you feel worse(especially if you have difficulty making tears). Yeah, you will probs have to change your lifestyle and may possibly not be able to things you used to which I know totally sucks especially at such a young age. Try not to think about it getting worse though cause stressing will just make it worse. Just try to live your fullest life with as few limitations as possible. Remove all the stresses in your life and just do you and try to be happy with what you have and what you can do as opposed to what you can't.
We had a mother who came here for information when her 4 yr old was dxd with SjS.
I think she ended up setting up a Facebook Page.
Take care - Scottie :)