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
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I need your help to talk to researchers of gastroparesis
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9 replies
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- By charliegirl3
- Posted July 22, 2009 at 12:33 pm
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go under the topic of gastropersis and GI motility and there you will find alot about us. I will help you since I have the same problem.
- By LizAA
- Posted July 22, 2009 at 7:10 pm
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Please tell them more research should be done for GP and chronic nausea-even though they look at numbers that this is a rare disease, the severity of it-people with intense nausea, vomiting, pain, and living the rest of their young lives on feeding tubes should promote them to find more treatments.
How about more medications that help with nausea?
Liz
- By charliegirl3
- Posted July 25, 2009 at 4:47 pm
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Pammer52,
For some odd reason my computer will not connect to your AOL account. I have tried several times . can anyone go to the meeting? I would love to hear what they are saying about it? I also would a discussion on the pain control and nausea the cramps that come with it. Also what they would suggest for people to eat who are not tube fed or TPN fed. I am barely keeping my weight up and energy levels up. I hate it that one day you have all the energy in the world and next you are on the couch in alot of pain trying to figure out what to do. Could you email me directly?
Charliegirl.
- By Lynee
- Posted July 25, 2009 at 8:52 pm
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I think understanding pain control is so important for doctors. I have had several tell me that GP doesn't involve pain at all. We all know they are wrong, but many of them actually believe it. I had a scope done one time and woke up in agony and had the doctor tell me if was the air they used and I just had to "walk it off". What an idiot - he let me lay in agony in the fetal position for almost 6 hours before "allowing" them to give me pain meds. I spent 10 days in the hospital after that little procedure.
Educating the doctors about this condition would be on the top of my list.
Lynee
- By Pammers52
- Posted July 25, 2009 at 11:02 pm
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I am on vacation but will find the gastroparesis diet website and send it to you... so keep looking here for a posting of where to look and I'll find it for you... for right now if you just eat low fat, stay away from hard to digest things like meats...and stay away from fiber... my daughter eats scrambled eggs, white bread, blended fruit in smoothies with yogurt, rice chex, rice, and I can't think of anything else off the top of my head but there is a diet that I wil find the website for and post..... I will look in my spam folder to see if some reason your mail has gone there. Phoeland2@AOL.com talk to you soon.. no one can go to conference..it is just for professionals, they are just meeting me for an hour to discuss my vision of what we can do if the patients and the researchers team together to raise money, influence research, get more govt. grants etc. So I will have lots of jobs to put out there for everyone once I have my meeting!!!
- By Pammers52
- Posted July 25, 2009 at 11:16 pm
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for diet and nutrition information go to www.digestivedistress.com then go to nutrition
- By JeniMac
- Posted July 29, 2009 at 2:32 am
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Can I just say thank you? You are amazing. I am 24 and have motility issues...someone needs to speak up as medications are not plentiful...I will e-mail you with thoughts. Thank you so much for taking a stand. I'm amazed they answered back...that is certainly a good sign.
Jen
- By prettykitty
- Posted July 29, 2009 at 3:56 pm
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I'd love it if they'd do research on reducing or eliminating the nausea that accompanies GP. This is one thing that I absolutely hate with this disorder. Sometimes several nausea medicines just don't work, especially over time.
Another thing they should do research on is how having a feeding tube for enternal nutrition or being on TPN affects young adults. My doctor told me that there aren't a whole lot of young adults who are on these treatments for GP, so its hard for people to understand how fustrating it is; physically and emotionally.
Jessie
- By Sheas-mom
- Posted July 29, 2009 at 6:21 pm
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I to haven a 20 year old daughter with GP. SHe has a feeding tube and a G-tube as well. She tried TPN but got several infections from it and is now on nightly feedings via her J-tube.
I agree that her biggest problem is with nausea. She takes 50ml of Phennegran by IV eery 4 hours. She is allergic to Zofran. She does not have to set her alram anymore as her stomach will wake her up with her being sick if she does not get her Phennegran every 4 hours.
THANKS so much for doing this. Let me know how I can help. I am all for being an advocate or my daughter and to teach her how to be one for herself.
Blessings to you
LaQuita
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