I WOULD LIKE TO KNOW OF OTHERS EXPERIENCES AT THE NIH. MY 42 YEAR OLD DAUGHTER (SHE HAS SCLS & HAS BEEN TO MAYO CLINIC) AND I ARE OFF TO NIH NEXT MONTH.

You have nothing to be afraid of and, on the contrary, you should consider yourself very lucky for the opportunity. Your daughter will be interviewed by various scientists and then she will be asked to donate blood, and blood components, for scientific investigation. The procedure itself is pretty painless and it's all for a good cause -- subjecting the blood to the most sophisticated analyses ever. You will have some of the most in-depth conversations about SCLS and about cutting-edge treatments you will ever have, and since it's all free of charge, you'll feel like you're finally getting something for all those taxes you pay!

WE ARE BOTH VERY EXCITED ABOUT BEING PART OF THIS STUDY AND ARE LOOKING FORWARD TO LEARNING ALL WE CAN ABOUT SCLS. WE HAD SUCH A GOOD EXPERIENCE AT THE MAYC CLINIC AND EXPECT THIS WILL BE AS HELPFUL.

I'm set to go to NIH Next Sunday. I'll post my experiences here.

Good luck. Yes, want to hear all about it. Where are you traveling from? Is family going with you? Photoqueen8

I'm extremely lucky as I'm a DC native. Its a quick metro ride from my apartment.

Hello All. Quick update on my Doctor visits: Mayo Clinic to see Dr. Greipp June 23, 2009. Worth the trip just to get information and discuss the CLS with him. Dr. Greipp referred me to Dr. Druey at NIH and recommended blood tests. Went to NIH Oct. 13 through 15, 2009. Just got home. Met with Wei Lu and Dr. Druey. Both are great. They will spend all the time you need in discussions. My wife Nancy had to work Friday so they scheduled all tests in three days for me. Dr. Druey and his staff will accomodate you for your needs if they can. This is a fact. They even housed Nancy on campus so she could be close. It is worth our time to go to the NIH. Please do so as soon as you can. Met with Arturo and Nina (wife) on Wed. evening. They are a great couple. Wish we had more time at the NIH to meet with Allan and Judy as well. NIH is setting it up so I can send real blood samples to them during cls episodes. Please call Wei Lu and schedule your visit.(301) 594-1233 (Office) e-mail: luwei@niaid.nih.gov. Walt Breidigan

When my brother allen had a severe episode in sept 2009 I called dr druey when it began and he was able to come to the hospital an get blood samples during the episode. My brother lives in washington dc near NIH. He had been to NIH in june 2009 and had a great experience and that facilitated the communication that helped us contact dr druey during the sept 2009 episode. Dr druey got allens blood which we hope is helpful. My brother has been back to NIH since and th information that dr druey has given us since allen first partipated in june 2009 has been invaluable. In other words for giving a little blood you will gain much more in return. Thanks dr druey and NIH!

Bonjour, Pourriez-vous leur demander ce qu'ils pensent des immunoglobulines. Dans mon cas, on prévient les fuites avec un traitements mensuel et tout va très bien depuis. Bonne chance Merci