Sjogren's Syndrome Awareness Video

My stepdaughter Katie made an awareness video for Sjogren's Syndrome, the 2nd most common rheumatic disease. She did it as her Senior project. I'm so proud of how much time and effort she put into it and am so grateful she chose Sjogren's as her subject.

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[bagelbreather]

I must also say that I started crying during this video. Never was around anyone that fully understands. My husband supports me too. I feel so fortunate for that. Please if I can help in any way let me know. That goes for anyone reading this. What a wonderful video!!!

[MamaEarly1]

I am so pleased and touched when people tell me how the video affects them. Telling my story was hard because I feel like I've been denied the career I loved, but I'm so glad that people realize that someone "gets it". You might want to join the Sjogren's Syndrome Foundation at sjogrens.org and maybe attend one of the functions. The first time I attended a conference was the first time I met anyone else with SS and it was wonderful to finally realize I wasn't alone.

[bagelbreather]

Thank you so much for making this video. My first symptom of Sjogren's Syndrome was when I was 4 yrs old. I was not diagnosed until I was 50. I was a practicing RN until the age of 47, when I literally dropped. I too loved my job. If there is any way I can help with research, I would be extremely grateful. Where do I look for these rally's and research places. I promise I have at LEAST 1 symptom they haven't logged. I feel with my background in medical I have theories with physiology. God Bless!

[MamaEarly1]

Thank you for your kind words. You can get a ton of information about reasearch and the walkabouts and conferences by joining the Sjogren's Syndrome Foundation. Go to sjogrens.org. I volunteer and my attends as many events as we can.

[GaryYOfficial]

This was very informative. Thank you! I was just DX'ed 2 days before Thanksgiving. I'm lucky considering the average DX time. My SSA level was very high. The range is 0.0-0.9 and mine was 7.7 .. and I'm pretty sure I have Polymyositis along with it. The statistics don't match me in any way. I'm 28 MALE, and just diagnosed. Not a women, not over 40. I also have IC which is more common in women over 40 and less common in men, but when they get it, they are over 40. My body is weird.

[MamaEarly1]

Gary, if you are interested, there is an email list for the exchange of medical info that has several men on it. Go to dry.org and look for the email list called SS-L.

[Małgorzata jakaś tam]

Thank U for this video !!!!!!!!!!!!!!!

I am in Poland and it is very difficult to diagnose here .

Maggie

[OZARKCOTTONTOP]

I was just diagnosed after going in for sever fatigue,rash,hair loss etc & feet pain so bad it was taking away my ability to walk- My Dr was Great however when sent to The Rheumatologist he said I had vit D deficiency & Sjogren then gave me eye drops & sent me home after being told all the other symptoms wasn't his problem =( I am NOT one to go to a Dr because I just wait for things to pass - It took me 2 yrs of symptoms to go in this time just to be all but laughed at ... I am lost & confused

[dayone54]

hello mamma early and thanks for sharing. last nov 2011 my optomertrist ref me to rheum.

long story short: my ssa was 1.0 i tried to explain reason my eyes were red and itchy like sand was bcuz i juiced and drank bad canteloupe. rheum dr said ur ssa 1.o u have ss here get this mes it will make u colorblind its no big deal. i told her u take it and left. all i have is dry lips no other symptoms. what do u think? no more red eyes etc. ever since

thanks,

debi

[Maria Pery]

This is wonderful. I've been trying to find people who have this and can talk to me, and managed to find an old friends who also suffers from Sjogren's. I'm a teacher, and had to stop a while ago due to this condition. It has taken over my life. I also have kids, but I don't have a good primary care doctor (in England we call them GP's). I also suffered from dry eyes for years, and only now do I have the sever symptoms of pain, fatigue, brainfog and depression. Thank you again for this.

[Robert Conner]

here is my story, when I had a rash, a dermatologist scraped me, tried to get a skin sample, he said and I quote "its something in the dandruff family", and thats when my nightmare began, it got into me through the scars he put one me. there is no one else on this earth that understands this, this is NOT a theory, this happened to me, it is fact, I do not need a so called expert to "educate" me on what I know to be true, they have no idea what causes auto immune illness and thats a fact. Thanks

[MamaEarly1]

You are very sadly mistaken. Dandruff is simply flakes of dried skin that fall from the scalp. It cannot get inside you. It is not a fungus. Go to the Sjogren's Syndrome Foundation's website to get the correct information.

If you truly believe what you wrote above, then you need more help than an expert in Sjogren's can give you. Please educate yourself.

[Patti Pacer]

Wow, listening to Patricia's story was like she was telling my own story. I was working until 2 months ago. All week long I would push myself everyday to make it to work only to feel the fatigue start creeping up by Wednesday. Along with the fatigue I had dry, red, burning eyes and always a dry mouth. All of these symptoms caused me to begin to make mistakes which were critical errors. I knew a few months before they let me go that I just couldn't keep on until they made the choice for me.