my little sister (24) has just been diagnosed & is feeling really down in the dumps :'(
she is relieved to have been given a condition to identify with, but is also physically & mentally quite unwell.
i am trying to encourage her to research the condition, and learn how to manage it, rather than it manage her.
i wondered if you experts could provide some reassurances / tips / alternative therapies for her to consider.
any advice would be greatly appreciated.
thank you
Hi
Thank you for posting on your sister's behalf. If you could encourage her to come on to the site, she will meet lots of young people like herself and, if she wants to, make some wonderful new friends.
I'm sorry to hear that yet another young person has been diagnosed, but in a way, she may be luckier than many of us 'oldies' who have probably had the condition for decades, without knowing what was wrong with them, and without treatment. Although it will be hard for her to hear, if she has a diagnosis now, she should be able to get the treatment she needs, to allow her to 'get on' with her life.
Please encourage her to at least look at the site. You are always welcome too.
Sending you both a hug.
Kathyx
Hi Newintown,
Let me also welcome you to the SJS World! Please have your sister check out any issue she has a question about through the search engine in the upper left side of this page. She'll find a ton of topics and just oodles of information available to her. If she can't find an answer, tell her not to be shy as we are one of the friendliest boards around!
I'm sorry that she's been diagnosed with SJS, but there is a ton of living yet to do! Kathy is right, there are several 20 plus somethings here and a few even younger that have been dealing with SJS for a while and I'm sure that some of them will stop by soon to say hi too.
Again, welcome and hope to chat with you soon.
Take care -
Patze
Hi newintown
Your sister is so lucky to have you as her sister! It's great that you've found us and I hope we can give you both the support and information you need right now. It's always a shock when you first get a diagnosis, as well as a relief that now you have something specific to deal with.
The best thing to do is to think of specific symptoms that she needs advice about - dryness issues or exhaustion or emotions or neurological issues - and post a question about each one asking for advice, experiences and possible treatments. As Patze says, the search engine works really well with key words.
I'm another of the 40-somethings who has probably had SjS for years, but I'm sure that one of our younger members will be along soon with help and advice.
Thinking of you both - Chickpea
Hi Newintown :)
Welcome to Sjogren's world.
Do encourage your sister to have a look in here because the forum users are all kinds of ages ranging from 4 years old - on up into the seventies! Sjogren's seems to be able to strike at any age.
I hope you find the site useful.
Take care - Scottie :)
Welcome and I hope both you and your sister find the information you are looking for.
When I was first diagnosed with sjogrens and I started reading and researching as to all the things it COULD bring, I got very very very scared. There seem to be a mountain of problems that this SJS has the possibility to bring.
But then I found out that this disease can be and is very individual. Just because you read about things this can bring, does not mean that as an individual, your sister is going to have that issue. Not everyone experiences the same complete set of problems. And just because a problem CAN be a part of the disease, it does not mean it is going to something you or your sister has to deal with.
So you need to learn to deal with issues that your sister has, and not to panic or worry about the issues, your sister doesn't have. The disease can progress, but having it does not mean it IS going to progress. Knowing that reduces the fear that comes with being newly diagnosed.
So welcome and as many has said here in the past, don't be worried about asking anything on this forum. There are some very smart people here to answer the questions.
Ohiocat is absolutely correct!! I had researched this disease before the actual diagnosis so I was scared to death!!! Then when my DR told me I had it, I actually said I had wished it was diabetes instead!! He said NO NO - that's much worse. This doesn't have to get bad. He told me that the really bad things are rare and not to worry about them. I was still scared. I came on this site and read about all of the horrible things and got more scared - almost quit the site. Then all of these readers reassured me that my dr was correct - - there are plenty of people for whom this disease isn't terrible. I am finally getting to the point where I'm OK with this and glad it's not something much worse (for me). Encourage your sister to read here, but not to fear here :) - - I have found the people to be extremely comforting, caring and knowledgable. I'm glad I didn't quit.
Voiceteacher
thank you all for your lovely words of support :)
i will encourage her to use the forum - as she knows much better than me, how she is actually feeling.
i am certain learning that there are so many other people going through exactly the same thing, will be reassurance in itself.
Hi Newintown,
Welcome to Sjogrens World to both you and your sister...how lucky she is to have you in her corner and to help her through this. As has been said...its always a relief to get a diagnosis....none of us want to be sick...but its nice to know that what we are feeling and going through is real and it validates our symptoms. It also enables us to get the proper treatment we need to help with whatever symptoms we are experiencing.
Please come here often and invite your sister to do the same. There are so many kind and knowledgeable people from all over the world who come here and really understand. This is a safe and supportive place so feel free to read all you can and ask any questions that come up!
WELCOME!!
First of all your sister is very lucky to have someone in her corner to support her. There are SJS folks on this site whose families still don't understand because "they look ok". Kudos!
When stuff like this comes up I think most people have to go through stages (almost like the stages of grief).
There is sadness, denial, etc and finally acceptance. But everyone goes through it at their own pace and time. I had two years where I was scared to death I had some type of cancer, as that what the so called specialists thought it might be. So I already went through the process by the time my SJS was diagnosed. My father was disabled when I was young so I grew up a bit faster too.
She is the same person but just has some limitations now. At 24 the world still feels like your oyster and you really have not gotten hit with any of the bad reality stuff yet. It doesn't sound like at this time she is ready for acceptance yet. I understand how hard acceptance is for someone. Also it helps to get your mind off it at times. I compare it to a big ugly gorilla in the closet. He is never going to go completely away and quit causing problems BUT you can lock him in the closet at times (get it out of your mind) until you get better used to dealing with him (ie acceptance). Once a person gets to the acceptance part, then you are ready to get actively involved in your care/health. At that point you better listen to what others are telling you and you can get on with your life regardless of any limitations you have. It does take time though.
Once again, I am sooo glad she has you. Most dont' have anyone. I was lucky in having a cousin with a long distance shoulder to cry on. Good Luck!