I need your help to deliver a message to researchers of gastroparesis

I am the mother of a 23 year old daughter with gastroparesis. I decided about 3 weeks ago that I needed to become more involved and become an advocate for those with gastroparesis as many don't have the energy to fight the fight. So I contacted all the leading researchers across the country and amazingly they all answered back. I told them I felt there is a big patient population that needs to be heard and that we need to fund the research that the patients want. I am trying to organize a fund raiser where your voice will be heard about what your needs are. Another amazement, I made enough noise that I have been invited to talk to the committee of researchers at a conference in Chicago Aug. 30.
What I would like from all of you is to e-mail me your feelings as to where you think research should be focused....like for my daughter I would say less nausea, bloating, loss of energy, nutritional info.... I want to take as big a stack of e-mails as I can to show that there is a patient population that is not being heard and we need to be. My e-mail is Phoeland2@AOL.com and that is easiest as I can just print each e-mail as it comes in or if you feel you don't want your to use your e-mail you can put it on here and I can cut and paste. My goal is to get all of us as one voice and start feeling like we are heard and we are part of the solution. thanks for any help you would like to give.... as this proceeds I will need all the help you have the energy to give.....I have definitely jumped into the deep end of the pool...Pam

By lilwildbear39
Posted September 18, 2009 at 3:45 am
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Pam
My daughter is almost 24 and was born with an infalasile, her intestine was on the outside through the belly botton. She also had a minimal blockage between the small and alrge intestines that was removed and things were placed back inside her tiny body. Her first 13 months we had no ideal what laid ahead of us, nobody told us what to expect. As "gooser, her grandfathers nickname" grew she became normal with bathroom functions and abilities to eat food. However, by the time she was three we began our trips to and from Mayo to find she was lactose intolerant and also had a bacterial overgrowth from the "junk" sitting in her gut and this meant a life style change. When we came home to the Dakotas the doctors would over time discontinue her anitbiotic for the bacterial over growth and tell us she would be okay. And still aain we made another trip, this happened a total of four times in her young life. While she stayed on the anitbiotic she did manage okay.
She continued on in high school until about four years ago with very little problems. She began to have blood in her stools and in her vomit. The dotors here didn't know what to do. They ran so many tests and repeated tests to find no clear answer. They began to open her up thinking if they opened the intestine and rerouted it to the gut it would work. It didn't the only thing that happened is we figured out she was full of adhesions and stomch was no longer working. Still nobody could shed light on anything for us. She went to Mayo and had the adhessions removed and a "G" and "J" tube placed for her life support. "J" provided food and "G" dumped the bile that was making her violently ill. She had the hyckman but also had several infections and was getting weaker instead of better.
Still there are no anwers to why or whats next or life expectancy or prognosis. She got married almost a year ago and is now expecting her own children.
I am only nervous for her health and well being and very greatful for her determination and desire. Still to this day there are no answers no help no direction for her young life or the many others out there.

By Pammers52
Posted September 18, 2009 at 12:19 pm
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I am so sorry for all you have gone through....I know how difficult it can be and how much it hurts to see your child go through all of this....if you would e-mail me directly I would like to talk to you about a few ideas I have..... don't know if they would be of help but would like to talk to you...when you e-mail me I can give you my phone number and maybe we can talk about some other options.... I also would love your ideas about how we can band together and make this an effort to help many of these young people suffering with digestive disorders...my e-mail is Phoeland2@AOL.com

By Pammers52
Posted October 11, 2009 at 4:31 pm
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I never heard anything else so I don't really know...I have been so busy trying to become a patient advocate and fund raiser for ANMS for Gastroparesis and Motility that I havent been checking in as much... will definitely become more active again once I have ways for all of us to speed up research and new medications and get more information available to people....I am working on it but the legal end of making me part of the organization is taking some time... please keep in touch...I am trying to move as fast as I can....Pam

By Pammers52
Posted October 13, 2009 at 12:37 pm
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Once ANMS gets the legal stuff all in line I will put out a discussion asking what everyone thinks they could do...I really think if we all pull together we can raise money and awareness and not be this disorder that no one has heard of.....I am pushing as hard as I can and will get back to you when I know anything. Thank you for you wanting tohelp...I think we will make a difference! Will get back to you hopefully soon. Pam

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