Sjogrens of Discovery Health Mystery Diagnosis

[Debora]

Hi All

I happened to be crusing thru the TV guide today and saw the Discovery Health channel doing an article called "The Woman Who Couldn't Cry".  I just knew it was about Sjogrens!!

Did anyone else see it?  I recorded it so my ex WILL be sitting down and watching it!  My Mom also watched it and it helped her to understand it more.  I was soo happy to watch it, if I had tears, it would have brought tears to my eyes!     Linda Charles did an excellent job of telling it like it is!

Debora

[Pooh]

Hi Debora,
I'm so glad you caught it.  It's been on quite a bit in the past few weeks.  I hope everyone had a chance to catch it.  If you want to see what the others thought of it.  Check out the thread on the next page.  Quite a few of us seemed to see it in different ways.  Very interesting. 

https://sjogrensworld.org/index.php?topic=5004.0

Hugs, Pooh

[Debora]

Thanks Pooh, what would I do without you!     

I just checked out that link and wow....  lots of people who saw it!

Thanks
Debora

[Pooh]

Your welcome Debora.  I'm happy to help when needed.

Take care and have a good day.  I'm paying for my day out yesterday.............................but boy! was it worth it. 

Hugs, Pooh

[Debora]

Hi Pooh

Sometimes we need to get out and enjoy knowing we will pay for it the next day!
I did that a few days ago wandering in a field for a box with a belt buckle buried somewhere, the reward was $500.00 if found!

My daughter and I looked but not in the right place!  Its the beginning for all the fun of the Motherlode parade and rodeo.  I'm now beginning like I will live again!  What made it worth it was my daughter telling me it was more fun doing that than out shopping or spending money that we don't have!

I hope you are feeling better!
Hugs
Debora

[ldcharles]

I am Linda Charles and was recently featured on Mystery Diagnosis, since it took till I was 50 to be diagnosed.  The show comprised over 48 hours of filming for an end-product that is only 3 six minute segments (a half hr show with ads).  A lot of liberty was taken for time limitations.  Not all of my symptoms or treatments were discussed.   I work with the Sjogrens Foundation on the Allied and professional awareness committte and I am a nurse (RN,BSN) who has been on disability since 2003.  My sister has the same dx.  I have done a lot of research and am trying to find a Master's level nsg program that will allow me to do my thesis on Sjogren's.  If I can answer questions or assist anyone, pls contact me at ldcharles @comcast.net.

Wishing all of you well.

Linda Charles

[ldcharles]

Thanks for the kinds words. Tho I was happy just to get national coverage for Sjogren's, it could not, of course, cover all the treatments, tests and meds done.  The editing left lots on the cutting room floor.  If you have any questions, I would be happy to answer. I am on line at ldcharles@comcast.net.  Thanks again, feel well.  Best regards, Linda

[Debora]

Hi Linda

What were the odds of you and your sister both being dx'd with this!
Thank you for doing the show!  Who knows how many people  saw it will be able to say "there is a name to this disease and it isn't  "Crazy!"

Take Care
Debora

[itssue]

I missed the program, does anyone know when and if it will be on again?

Thanks,
Sue

[Debora]

Hi Sue

I'm not sure when it will be on again but I sure will keep an eye out for it and let you know. 

Take Care
Debora

[ph]

Hi

i just checked discovery health's website and the show will be on again on june 17, 1 am
june 21, 7 pm, and the 22 2 am. those are eastern times, but if you go to discovery channels website you can search for the tv schedule.

Paula

[ph]

   Hi Linda,

I watched the program and was going to try to figure out how to find you.

Congratulations, I think you did a fabulous job getting across the major points on Sjogren's.

I loved that you started in childhood. Boy do i remember the dental visits. I went so often that at 10 , I was going by myself after school.
I wanted to cry when they showed not being able to play when your son was small. It brought back a flood of memories long forgotten.


I think the program made some major errors that really should be corrected .

One has been mentioned here in that they did not mention that it is generally a rheumatologist who manages Sjogren's.
Another is that antibiotics are not the treatment for Herpes . It is a virus so treatment is antivirals.

Another is that Protonix is not an immune system modulator. It is a proton pump inhibitor.


I was sorry to hear you say that your lip biopsy was so painful. It shouldn't  have been. But then I have never heard of an opthalmologist doing a salivary gland biopsy. I was hoping that this was just part of their time constraints and some bad editing.

Do you have anyway of directing me how to contact them, or will they give you an opportunity to comment?

Getting the word out is fabulous and the only way that there can be hope for improvement for us and those who come after us.

My father was diagnosed with Sjogren's in 1981, My sister this year. And in all likelihood my mom had it , although never diagnosed.

I applaud you for getting the word out. I do it by holding educational meetings three times a year, functioning as a consultant to healthcare practitioners and a website with lots of sjogren's information.

Thank you for all you must have gone thru to get that on the air.
www.sjogrens.netfirms.com