My ultimate *bleep!*to Sjogren's

[Sadrian]

Yay!  Today the NIH contacted me.  I will participate in their studies down in Bathesda, MD.  They can poke me, prod me, drain me of my blood, and make me sweat.  I don't have any children and am fairly young at 33, so this is easy for me to do.  This will be my ultimate FU to Sjogren's.  I need to help science help us get better. This will help me not feel as victimized as I have been feeling of late.  I am so excited and will let you now how it goes... (won't be for a few months) 

If anyone is interesting at looking into it themselves, it is http://www.nidcr.nih.gov/Research/NIDCRLaboratories/MolecularPhysiology/SjogrensSyndrome/CurrentClinical.htm

Cheers!

[Scottietottie]

Hi Sadrian 

I'm glad you're excited about this and I hope it benefits you too and I think it's a lovely thought that you're putting yourself on the line to potentially benefit the rest of us! More power to you!

Take care - Scottie 

[eyeamdry]

Sadrian, I, too, applaud you for doing this.  I'm "not so young" without children at home and could do it if I was nearby.  Living in Michigan is out of the question.  You keep us posted when you have more info, ok?  Lucy

[Billydude]

I went thorough a Sjogrens Study at UCSF.  Its a good idea.
Steve

[wednesday mc haggis]

sadrian

i am so glad that this is giving you a feeling of empowerment and so it should! Its a selfless thign you do. You got tell sjogrens FU , grab it by the B*lls , please keep us informed on your feelings and thoughts through it, i can take part in it, its other side of world lol , but we cann all support you on your journey emotionally with it. I am so proud of you for doing this, i dont think everyone could or would do it, at ?? i think its shows even more courage that if you were older, for youve a life to lead, and your devoting your little energy to this, wow girl  more power to your elbow as we say here, you go get em floyd!! 


T x

[MusicGuy]

Good luck with it all Sadrian.

[BonusMom]

Like BillyDude, I also participated in the Sicca study at UCSF. It was very comprehensive and I'd do it again

[lynnmarie219]

Hi Sadrian,


It sounds like this will be a great experience for you as well as for others to benefit from in the future. Thank You!

Let us know how it goes when you get started in the study...it should be very interesting!!

[Sadrian]

I will let you know! My appointment is in mid-May!   

[ktfabian]

Sadrian,

I also just joined my first clinical study.  It has to do with people with sjogren's who take Rituxan and whether the flu vaccine would really be beneficial should there be a big bout of flu one year.  I didn't even have to think before agreeing to do the study.  Anything I can do that will help us understand this "gift" as Pooh calls it just one little bit more, I'm in.  My study runs for a year and a half and I'll get at least the cloroxed version of the results.

Happy studying,
Tracy

[Patze]

Hi Sadrian,

Congratulations and good luck on the study!!!  Please do keep us updated!


Patze

[Sadrian]

Wow Tracy.   I would like to hear more about your study and the flu. Good luck!

[JannaLee]

Thank you honey!

Thank you for doing this for me and for all of us...but mostly, thank you for doing it as an "ultimate FU to Sjogren's!" 

You are an inspiration!
Janna

[Tinker]

Sadrian,

I looked at the website a little, but never ran across info about who pays for your travel expenses to get to Rockville, Maryland.  Or do you do this at your drs office?

I particiapted in an NIH study for breast cancer and they paid for our trip out there, and our family made a fun trip out of it.  Don't know what happened to the study as we've heard nothing for years.

Any details you have about this is appreciated.  My identical twin and I would be good subjects, I think.

Good for you for contributing to science to help the rest of us.   Thank you!     Tinker

[Sadrian]

Hi Tinker,

Regrettably they do not pay for travel.  I'm only two hours away, and since gas prices are down from what they were, it is not too bad. I'm going to get a hotel the night before and hope it will be a tax write off.

The first two studies are really quick.   Just an examination of the mouth and eye.  Then collect saliva.  Do a lip biopsy (which I hope I can get out of because I acquired my slides and specimen from my biopsy last month.) The study starts at 8am and it appears that it will be over shortly after lunch!

I will be screened while I am down there to see if I am suitable for the autonomic nervous system study...  which I suppose I would go back for on another trip. 

It does have me thinking though...  i wonder if these studies have a hard time recruiting people because of where they are located and travel costs.  It would be nice if there was a separate charity fund of sponsor people to go have studies done. 

Does your identical twin have sjogren's too?  You two would present an interesting study.