My daughter was diagnosed with Sjogrens 2 years ago at the age of 17...She's starting to suffer quite badly already.. But the consultant mentioned that it was hereditory and that i should get tested. Which i did last year but my levels were pretty normal and he told me to get tested once a year..Is there anyone on here that a parent and child has it? would appreciate reply
Hello,
my mum was diagnosed with secondary Sjögren's syndrome along with a few other things about 8 years ago, I was then diagnosed with primary sjogrens in January this year so it definitely can be hereditary. Think it's more common to be passed on to female relations but then my sister shows no signs of the disease at all a neither mine or my mums consultants have mentioned her getting tested?
Hi
i was told it's more common in females...it's just such a shame with my daughter getting it so young..Sorry to hear you have it too..Ithink with men having it, it's more of a slower version of it..With the symptoms i have, i just assume its aches and pains coming with age..
Hi Jirkako ~
I'm so sorry to hear your daughter, being so young, having struggles with sjorgens...I'm sure you can google if sjorgens is hereditary, that's a good question. What I've found is helpful yet still leaving me with some doubt. Many autoimmune disorders are believed to be passed down from parents to children, and researchers are closer than ever to unlocking the genetic secrets of their transmission. I do know that it's an autoimmune disease and I'm not sure if all autoimmune problems are in fact, hereditary.
Does your daughter or did she ever go through a time when she stayed up all hours of the night/morning to be online? That in itself depletes the immune system. Possibly, if you have the funds, get her a "light therapy" aka uv light to help her mind know when it's day and when it's night. If she's had bad habits as I said, up all night and little sleep, you may need to use one to get back on track. You can always rebuild you immune system. Don't wait until there's more than one disease.
For every one day w/o the correct light therapy (it's a usual pattern...ie: up at 6 am to bed by 10 pm...or whatever one chooses for themselves) anyway, for the one day w/o correct light/night it takes 30 days to correct this pattern and if you slip for only 30 mins...you can go back to the 30 days to get you back on track....I'm suggesting this because I, myself, have two auto-immune diseases and I know my sleep pattern is all of nun.
Not to contradict myself, but, I just found out about the light therapy a few days ago. I know that my sleep patterns are awful from a few factors...one, I believe it did start with me staying up all night online or watching TV...and it ballooned from there. I was in an auto accident with severe injuries and pain and compound that with the terrible sleep patterns I already had/have, my immune system didn't stand a chance. My doctor suggested picking a time to go to bed and stop ALL outside influences such as the computer as it has a blue light and it tells you that it's DAY....stay up! or Television also has a blue light (a perception your eyes have with day or night) and that also tells one to STAY up! So if you pick a time say, go to bed at 11 then at 10 stop everything and maybe listen to soft music...but don't read, kindle, computer..television etc...no stimulants!
I am also suggesting this because I know what a 17 yr old does, as my daughter was not too long ago and she was up all night until she saw what happened to me...guess I took one for the team 
no kidding aside....she did stop her bad habits and she never had an immune problem...so my belief is that while some autoimmune disease most likely not hereditary...from celiac disease to multiple sclerosis, in which the body’s defense system mistakenly attacks itself. some others are colitis and such...perhaps ask her doctor who's treating the sjorgens...that may be of great wealth!
Unfortunately, sjorgens as well as sarcoidosis, which is both of what I have are indeed autoimmune and not much is known about them...I should say, they are heading towards some help but still not quick enough.
My sarcoid started in my lungs and lymphnodes and the sjorgens is in my eyes along with the sarcoid...my upper region is a hot mess. If your daughter is also having problems with her eyes, I see a doctor at the Kelloggs Eye Center in the USA....I know there are only 5 here in the states but also know there are many in Europe..UK etc...perhaps that is a way to go? If you don't have one around you, I'd be happy to share with you what I've received from them and also find out where there might be one around or close to you w/o having to come to the states...although it's awfully beautiful here 
Good luck and please keep sharing what you've found out and I pray your daughter gets the deserved help she needs at such a young age!
Warm regards,
Frustrated
Hi women are more likely to have %wise both lupus and sjogrens but saying that I had a brother who had lupus. Doctors are thinking maybe I have other one- sjogrens. Not well a lot really with joint pains, sore eyes and terrible dry mouth. Have sores in nose and nasal probs that sounds petty but together with leg pain its all hard work at the moment
Hi Frustrated
thank-you for the reply, and for the useful information you've provided.I really appreciate it
Hello again Jir ~
There was a reason I spoke about the Kelloggs Eye Center. After being diagnosed with sjorgens, I had endured a six week program to get me started wearing "prose lenses". They are somewhat like contact lenses but they are much larger than regular contacts. They fill the entire color of the eye area and out almost covering the entire white area...that's why it took so long to finally get them. They fit you, then make adjustments and send it to Boston and they overnight ship back to my doctor and the fitting goes on and on for almost six weeks. three times a week for three hours each time....never less than that and definitely longer for some. The idea of using the prose lens is that there's fluid that the doctor perscribes you as to what to use...anyway, you fill the lens up and "gingerly" open the one eye as wide as possible holding the contact in one hand and the other is stretching the eye as wide as it can go....the contact is full of fluid and it's so soothing to the eye.
After having such dry eyes that the lid stuck to my eyeball and it was extremely painful to try to get the lid off the eyeball. Ok that's just wrong in so many ways! Anyway, you can wear the lenses for up to 9 hours BUT..and a big but you cannot fall asleep when they are in...if you do fall asleep and it's more than 30 minutes, you have to take them out for the rest of the day...even if you just put them in an hour prior falling asleep...the reason I'm making an issue out of falling asleep is that with most auto immune problems, exhaustion is one most of us fight. It's sometimes near impossible to stay awake.
Ok back to the prose lenses....as you can see, the lenses are really a positive to what seems like an endless time of suffering. The other plus to the lenses is that you see 20/20 when they are in!!! HURRAAHHH!!! Mind you, these are just lenses w/o a prescription...just plain ole' huge lenses. I never thought I would ever see that clear again! I was close to blindness in the left eye and the right was following quickly behind.
The drops I was told to use before I was diagnosed were eye drops with a gel in it. Also at bedtime I use the nighttime ointment. WOW what a difference that makes to wake up with your eyes unglued to the eyeballs! Perhaps that would make your daughter somewhat comfy. If she does use this already and she's still not getting any relief, don't walk, rush to the nearest Eye care center...with doctors that only deal with auto immune diseases...these doctors are rare and far and few between ...
NOTE TO anyone...if you're in college, Eye care is big...and especially if you specialize in the auto immune system and the eyes...lots of buckos...my lenses alone were $8 K all of which my insurance paid for with exception of the co-pay...about $500 out of pocket.
I hope you can get the care your daughter deserves...I'd give her my lenses if that were possible because I'm 61,,,I have a good life and lived one as well...your daughter is just beginning. My prayers are for you and your family...Please let me know how things are going. It really does help to talk/write about it...to people who totally get what you're going through.
Warm regards,
Frustrated
My posts are way too long...I'll try to cut it down! Well, after you read what I've already posted, that is. promises promises!
Hi ,I do hope my daughter doesn't get it, and yours feels better soon. just thinking my brother had lupus which is another - auto immune disease.
Medifocus Guidebook on Sjogren's Syndrome...this is a guidebook that helps one deal with and live with sjogren's. From what I've read about sjogrens, most likely it isn't hereditary...I'm going to order this book because it will be full of information all of us can benefit from...ok, ok, don't worry, I'm not going to be "the know-it-all"...I promise. I'll answer anyone if they are stumped that's if I know...I won't post unless I'm positive what I'm writing because I do read a lot.
your comments are most appreciated----thank-you
Thank-you
Why do the symptoms come so quickly...Now her saliva glands aren't working properly, leaving her cheeks swollen...This is awful, i feel so bad for her and helpless...
Hi Kaka ~
Kako...the symptoms are as what I've experienced. I cannot talk for anyone else. I know for me, it started in the saliva glands...my mouth was so dry it did swell my cheeks...my ent gave me something to produce saliva.
Are you seeing a Rhuematologist? I know that for both sarcoidosis and sjogrens, that's the main doc to see. Both of the diseases are inflammation of a certain area...cannot specify bc each one of us are different. For me, my sjogrens started in the throat/saliva glands..so dry that the food couldn't even go down making it stay in place...but, I was so inflammed that I didn't know it didn't go down...so, w/o any warning, I'd vomit forcefully w/o any means of stopping it. It was terrible for me. Run, don't walk, to the Rheumatoid Doctor because your daughter doesn't have to suffer. And, you may just help stop a situation in the lunch room: projectile vomit. Kids are rude and think it's ok to pick on someone. Your daughter doesn't have to suffer. Get to the doctor asap so other signs don't show up. It's like dirty dishes...if you keep them up, it's easier to clean. Analogy!
Keep strong, Kako's little girl.
Help is on its way!!!
Smile and carry on
frustrated61
Kako ~
The projectile vomiting for me was right in the middle of a sentence...it would just fly out of my mouth...so embarrassing. Kids at school are so mean and I certainly wouldn't want to add that to the list of things she's going through~
Keep strong for her.
Hi
she is seeing a rhuematologist..And has suggested that they will do a small operation on her cheeks inside her mouth to flush the glands through and to make them bigger, so that they won't block again and cause her cheeks to swell up..Plus it also depends on what she eats...Thank-you for the advice.....My actual name is Kyri
Kyri ~ beautiful name, btw. How do you feel about her having surgey? I just wonder, have they already done the steroids/methotrexate/plaquenil? All of those are anti-inflammatory but the metho/plaq are also a form of Chemo and that also helps with inflammation...also to help it from coming back. Just a thought
My name is Katherine
Hi Katherine, the 3 latest tablets she's on are "methotrexate, prednisolone and folic acid..She feels very poorly with them , but the doctor says it will take a few weeks until her body gets used to them..She's also on "Hydroxychlquine, sodium cromilicate and cetirizine
Hi Kyri ~
I feel her pain. I was very ill on methotrexate but like the doctor said, it does lessen as time goes by. Make sure she drinks a lot of water and/or her fav drinks. How's her appetite? Man oh man, what a nasty rap she has been delivered. I will definitely say prayers for her...if you don't mind, what's her name and I'll put her on the prayer lists I belong to. I do believe in the power of prayer...that positive energy does pass along to whomever is being prayed to. Hugs to your daughter and let her know, what she's experiencing is what Methotrexate/Plaquenil feels like...it means if you're feeling ill, it's doing its job!!
good luck!
frustrated
Thank-you......her appetite has changed due to what she eats..Some of the food feels like it's stuck in her throat, leaving her feelin awful....Do you know whether any of the medication she's on can affect the quality of her hair?