Gastroparesis on the Today Show
Gastroparesis awareness got a boost today thanks to 14-year-old Gentrie Hansen. Gentrie first made news earlier this year as she prepared for the gastric neurostimulator surgery after nearly 7 months of not being able to eat or drink anything. This morning she appeared on the Today Show and talked with Ann Curry about her struggle with gastroparesis, including being misdiagnosed as having an eating disorder.
[If you missed the segment, watch it here: Gentrie Hansen on the Today Show]
I thought Gentrie did a fantastic job. Such a brave young woman! She’s been through so much in the past year. Not to mention that it must be incredibly nerve-wracking to be on live TV, especially at 14. It was wonderful to see her looking happy, vibrant and a great deal healthier than she did pre-surgery.
I must admit, however, that I was disappointed with the Today Show’s handling of the segment. First, it really should’ve featured a medical expert who treats gastroparesis patients. Dr. Snyderman isn’t a motility specialist, or even a gastroenterologist for that matter, and she provided little accurate information about the disease. Second, they continuously described the condition as “rare.” In reality, there are at least 1.5 million Americans with gastroparesis — more than more familiar conditions such as Crohn’s disease or Parkinson’s Disease. Lastly, they neglected to explain that the gastric neurostimulator — which, for the record, does not act like a heart pacemaker — is not an option for everyone nor is it a cure. Rather, it’s a symptom-management tool, albeit one of the most effective ones available, for drug-refractory nausea and vomiting.
All of that aside…as they say, any publicity is good publicity. Especially when it comes to a disease with as little awareness as gastroparesis. So a big thanks goes out to Gentrie, her family, and NBC for what I hope will be the first of many national features about GP!
That’s my 2 cents. What did you think of the segment?
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22 Responses to “Gastroparesis on the Today Show”
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Gentrie did great, it’d be hard not to root for her and she has a great smile. I probably would have freaked out being on live national TV
. I do agree that it seemed that they skimmed over some stuff. Besides what you noted, I also would have liked if they included more info on causes. They did mention viral infection, but did not go into detail that a simple stomach virus can cause problems & that there isn’t a specific ‘gastroparesis virus’. Also mentioning diabetic/non diabetic neuropathy, surgical operations or trauma & eating disorders as possible causes would have been good as well.
Overall though, I am just happy it got some national attention
.
Gabriel, that’s definitely one of the issues I had with Dr. Snyderman’s explanation. She made it sound like a virus was the only known, or at least the most likely, cause of gastroparesis. As we know, post-viral gastroparesis actually makes up a relatively small percentage of the diagnoses.
Hope you’re doing well!
Hi,
I sent my comments to Dr Snyderman at http://today.msnbc.msn.com/id/21839940/.
Kim
I have a daughter, Allison, who is ten years old and began exhibiting the very same symptoms as Gentrie did in January of this year after a septoplasty surgery in December of 2009. We’ve taken my daughter to Children’s Mercy Hospital in KC, MO and Children’s hospital of Wisconsin and they’ve both come to the same conclusion that this is a psychological issue and just want to treat her for chronic pain and basically tell her to ‘learan to live with it’ while my wife and I know better that they bloating, delayed stomach emptying isn’t something she can willfully cause herself. How can we get in contact with Gentrie’s family to compare our stories potentially?
thanks
Diana and Tim Moore
Kansas City, MO
My biggest issue was with Dr. Snyderman’s explanation. I know it’s difficult to fit a lot of information into their very limited time slot – but to just make an off-the-cuff remark that her “rare” condition was “probably” caused by a virus, without any explanation is irresponsible. Truthfully, they’ll probably never know the origin of Gentrie’s gastroparesis, which is true for a lot of people with GP. It’s a shame thatGP and its treatments were skimmed over so much. I hope that Gentrie continues to do well.
As you said, though, any publicity is good pubilicity. So few people have even heard of GP, so anything that promotes awareness on some level is a good thing.
Hi, Diana and Tim. So sorry to hear what Allison is going through. I think it’s important to continue seeking out specialists until someone takes you seriously and gives Allison the attention she deserves. You can find a list of pediatric motility specialists at the end of this document: http://www.articles.complexchild.com/00028.pdf
I will pass your story and contact info along to Gentrie and her family.
Thank you much – my daughter’s missed almost 6 months of school and i’m afraid she’ll lose what was true zest for life before this all occurred! she was active in soccer, horseback riding, playing violin, distance running and basketball.. i can’t wait to get her back to her old self! Thanks for the help!
Diana and Tim Moore
I agree it was great to see this disease receive some national attention. It would have also been helpful to educate people that there are people living with GP that are not vomiting all the time but suffer from chronic nausea that can be just as debilitating. Pointing out the fact that this is a very individual disease and everyone is different, would have gone a long way. If they would have had a GI specialist do the story I am sure the message would have had a different angle. I have thought about sending the segment to people I know but I can hear them say “you aren’t that bad, what is your problem?”.
The segment was short and they did pack Gentrie’s story into it well and I commend her for her bravery. I am 35 and suffering with this horrible illness and certainly don’t have the positive attitude of this young woman. She has my complete support and admiration.
Here’s to everyone who is living with GP. Keep on keeping on…
I was very grateful for this clip. I have suffered for many years with a similar condition & went to many, many dr’s. I had been told everything from I just have IBS to maybe I need to see a therapist. Strong Memorial in Rochester, NY was the last place I went. I was ready to give up. Dr. Farmer & his staff took the time to listen & help diagnose my issue. I now take Hyomax-SR 0.375 mg 2x a day & Amitriptyline HCL 25mg once a day. I started these meds 6 months ago & they changed my life. I went from being in constant pain & averaging 2 ER visits a month to 0 ER visits in the last 6 months & intermitent pain & nausea. Same as this young lady, no one knows what virus caused my problem & I’m not cured but I feel like I have my life back. Any one that would like more info, please feel free to email me at amyhauff@hotmail.com.
I thought Gentrie did great for herself, but felt there was alot of important information missing, like there is not a cure and although she is doing well some dont do that well or have that option, I really disliked the fact the dr said it was from a virus and didnt mention all the other ways that gp can be caused by. I personally would like to see a updated segment of facts on gp and how important to get some funding for research for a cure would be. A segment on fact and not personal experiences as they vary from one person to the next would be great!!
My 24 year old daughter has suffered for 8 years with an extreme case unfortuntatley much worse than the girl in the segment. Not only does her stomach not digest, but her entire colon doesn’t move either, forcing her to throw up, and than spend every day with a 5 hour colonic procudure to expell what little food was digested. She spent 2 motnhs at the Mayo clinic along with many other doctors, we still don’t have an answer being her entire system seems paralyzed, they cannot “simply” remove the colon.TPN feeding is supposedly devastin in the end result.
I would love to know if anyone else out there has a similar condition.
I’d love to share information (we have a lot)
-thansk-
Great info! Love this bloq! My boyfriend has GP and is scheduled for surgery soon with the pacer. I really hope it works for him. I just wanted to say thank you for all the info!
I have been all over place looking for information to help change his diet!
do you have a bloq for men who are stubborn too? (joke!) If only more people would come forward so we can band together to beat this thing!
Have a great day
Gentrie’s segment was what got me on the track to researching the gastric neurostimulator for my son. He’s 2 yrs old and has used a feeding tube since birth due to extreme vomiting. He refuses to put anything in his mouth – it’s so heartbreaking watching him go through all this pain. I’m so glad to have a new mission to explore. I’m knee-deep in research and have some hope again!
Hi, Annie! I am so, so sorry to hear about your little one. I simply cannot imagine what it is like for him or for you. It’s hard enough to deal with this as an adult. I haven’t heard of any very young children who have received the pacemaker, so please keep me updated as to what you find out.
Warmly,
Crystal
Mark, my heart goes out to you and your daughter. Do they know whether the problem stems from the nerves or the muscles? Did this come on suddenly or did it progress over time?
You’re so welcome; I’m glad you’ve found the info helpful and I hope that the pacemaker brings your boyfriend some relief! It’s not a cure, but it can drastically improve one’s quality of life. Best of luck to him. Please update us afterward!
Hi to all:
I watched the segment with Gentrie and I am happy for her, being she is so young and that the pacemaker helped her so significantly.. I have been suffering with gastroparesis for seven years, two of which I went undiagnosed and was in and out of hospitals… lost 20 pounds. Listening to this interview made me cry and want to scream. They do not know what causes gastroparesis.. and not all treatments work for everyone, as most of you know. I feel so sad for this illness, and my heart goes out to all of you… and it is very hard to explain to people what the problem is. I too have been told I had an eating disorder, think I should take pro-biotics, meditate, have a positive attitude, which always makes me the problem of having this illness; meaing I am causing the illness. I didn’t realize the lack of compassion people have for what they don’t want to know about.. My mother, father and sister are dead… and my husband’s family, because of their lack of beliving me or caring, stopped talking to me. I forge ahead in my life, living the best I can.. still hoping for something that will work for me.. I have good days and bad.. but always the worst fear is that I wil choke on my food, or die, or it will get worse and worse as I age. I thought about the surgery,, but doctors say it does not always work.. it is one of the most insidious and abusive illnesses, and causes so much anxiety and depression. I do not go out to restaurants, unless I can tolerate watching other peole eat. I am a therapist and help others, and have yet found someone who has the compassion to help me….in spite of it all I work, travel, write, paint, work out… and learned to take cups with me in case I have to vomit……it is the devil in disguise this illness because basically they have no answers… ..I wish you all blessing.. I never give up… and remain active in my life….I just started a non profit organization and hope to help women who are recovering from abuse and trauma… which gastroparesis can cause post traumatic syndrome….particularly if it is set off by trauma, which in my case I believe was the catalyst…. thank you for listening.. and if I come up with any new results I will certainly share it.. My next stop is a new acupuncturist….and possibly taking the antibotic,Amitriptyline HCL 25mg , that has helped some patients with gastroparesis.. I am now on donperidone….which helps to the degree that I have gained back weight….I know I have said a mouthful.. thank you all again.. and yes Crystal I hope the pacemaker brings your boyfriend relief…Annie I feel so sad for your two year.. it has to be so stressful for you… I wish you all a cure.. to bad most doctors can’t even diagnose it properly ……and have little concern for the emotional and psychological effect it has on one’s daily life… okay I am going to stop…..
[...] the way it has been depicted by the media, the device is absolutely not a cure for gastroparesis. It’s a symptom-management tool. [...]
Thank you for posting this. I was diagnosed in July of this year and had never even heard of this condition/desease. I am new to this website and feel like I have finally found a voice and someone who understands what I am going through.
I am a 47 year old woman who was recently diagnosed with gastroparesis, after years of being told I had IBS. Long story short, I now survive on a jejunostomy tube. I suffer from pain, nausea, bloating, and feeling full after just a few bites of food. I do much better if I stick with fluids, such as Ensure, Powerade and water. I’m currently on Domperidone which doesn’t seem to help much. I continue to take it because it’s my last hope. I am on a waiting list to go to Mayo. They estimate spring will be when I will get to go. I spent 18 days in the hospital, which was supposed to be a 3 or 4 day stay getting my first feeding tube. It was the j peg feeding tube. The very next day I came down with staph, cellulitis, and abcess. I was deathly ill for 8 days. Once the high fevers went down and the infection was under control, they took out the j peg and put in a jejunostomy tube. I continue to get infection after infection around the tube. I’m miserable most of the time. I have a few good days and then the bad days always return. It’s a very frustrating disease and I wish there was more information and treatments for this terrible illness. I feel so alone. It’s hard for people to understand. They will say you look so good today, when I feel so horrible. Please if anyone has any new info. I would love to hear about it. I guess I will continue to suffer until I get to go to Mayo. I pray they can do something.
Cryatal I was just watching the clip and was wondering how she
managed to go to Wendy’s and eat a hamburger! I know the device
helps with symptoms and all but I would not think she could eat
a hamburger and fries but maybe the device did help her in ways
it doesn’t help others I would love to hear an update on her now and
see how she is doing and if she is able to eat and what if any symptoms she
still may have I think a follow up would be great.
Mechieal
Mechieal, I’m not sure either. I’ve had the device for two years and, while it’s absolutely helped a great deal and I wouldn’t want to be without it, I’ve certainly not been able to eat a hamburger. I think the piece was misleading in some ways. I don’t know her current status, but the last I’d heard, Gentrie was still on a J-tube. The frequency of her vomiting had decreased to once a week or so and she was able to eat some solid food. So while it certainly seems to have helped her a lot in terms of symptom management, it’s unfortunately not the cure the Today Show was making it out to be in the segment.