Two More Speakers!

Courtney Nichols, MSc, ScM, CGC, Genetic Counselor/Study Coordinator from Johns Hopkins University has agreed to come to the meeting and speak about the ongoing HD study! She will also be bringing some study participation kits, so if anyone is interested, she will speak with them privately after her talk and they will have a chance to participate in the study!

Also, Nicole Baxter-Murphey will be attending the meeting and will speak about her book, "Hirschsprung's Disease: Solving the Puzzle." I believe she will have a few copies if anyone is interested!

I'm working on an outline for the days events and still need to talk to the hotel about reserving a block of rooms.

Still feeling a little under the weather, but I wanted to update all of you about these things.

A visit to the ER

Last night, I began a round of the "yuckies" around 7pm and this continued practically non-stop until I left the bathroom and headed to the ER around 1:30am. Dx=Gastroenteritis. I had it twice in 2008 when I was pregnant with Taylor and once the year before that. I hope this isn't going to be a yearly thing! It came out of NO WHERE! It's really scary just how quickly I get dehydrated. My mom was told from the time I was little that any time I began throwing up like that, to head in to the ER right away. I suppose all of you have been told the same thing. Sometimes I forget that I'm not built like everyone else and am more susceptible to some things than "non HD" people. I don't really think about that until I'm already very sick.

I got a few rounds of phenergan, toridol, morphine, and of course....IV fluids. I was sent home with Zofran & Bentyl. My tummy still hurts as does my back where my kidneys are located. I've had some drinks and kept them down, so I'm hopeful that will continue, but I'm still in the "icky" phase right now.

PHOTOS WANTED!!!!!!!!

Hello friends! I've recruited a photography friend to take pictures at the HD meeting! YEA!

I've also asked her to put together a slide show for the meeting. If you're willing, please send pics of your HD loved one either then & now, or just now. I've looking for encouraging images and something to represent how strong we are and how much hope we have for future HD patients!

Please send photos to my e-mail address: brendajna@yahoo.com

Please submit photos asap. The deadline for slide show photo entry will be May 1, 2010.

Thanks a bunch!

Brenda

Long awaited conversation

Today, I got a call from Angie who was also born with Hirschprung's Disease. Angie is about my age and from what she told me, I am certain she has had a tougher go at "post op" life than I have. This was the first time I have ever spoken verbally to another adult with HD. It was indeed nice to talk to "someone like me." This is making me even more excited about the upcoming meeting next August. I'm hoping Angie and everyone else out there can make it! It's such a relief to know that others experience the pains & problems that I have. It's also a relief to know that others have beaten the odds as I have. The voices of HD patients are getting louder and stronger as the research continues daily. This gives me so much hope for my grandchildren, great-grandchildren, and further generations that may inherit the faulty gene as I have.

Angie,
It was so nice talking with you today. Please call me once in a while even if it's just to chat.
We are not alone! I will be praying for you every day. Don't give up the fight just yet. You have much to be proud of. You are a survivor.
Take care of yourself!
Brenda