Thank you Dr. Aziz for this information. It’s very helpful for the EDS people suffering and thinking they’re crazy or a hypochondriac. There’s so much going on and so much to learn and Dr.’s like yourself put it into perspective and give those suffering piece of mind.
@JacquelineMartinMinistry7 жыл бұрын
Thank you so much for putting on this webinar. It has help me to understand why I am having so many issue with my GI system. I live in the US and we are not a advanced as the UK when it comes to EDS. I was just recently diagnosed with EDS Type 3.
@EloiseEighteen7 жыл бұрын
Thank you! I have an EDS diagnosis but local gastro consultant insists there is no link between EDS and gastro issues 😥 getting worse year on year and I don't want digestion and reflux to get worse to the point of crisis before she listens! I wish all consultants knew more about EDS or my CCG would agree to fund me to UCL.
@daniellenelson24335 жыл бұрын
Are you on any medication? All of my doctors dismiss my symptoms. My gastro wants to put me on Celexa and klonopin to help with motility.
@andethidialbubabibub32614 жыл бұрын
At least you're diagnosed.. No one believes my symptoms
@dktc997 жыл бұрын
Is there any chance of getting a PDF of this slideshow to share with our GI?
@katvtay6 жыл бұрын
Kathy Ripple-Gilmour I can imagine many doctors not being on board with such a presentation because, well, we know how they can be. However, two papers published by Aziz are excellent. If any doctor actually blew off publishings, that’s a good time to say, “good-bye.” (ETA working link in 2019.) qmro.qmul.ac.uk/xmlui/bitstream/handle/123456789/18325/Aziz%20Gastrointestinal%20disorders%20in%20joint%20hypermobility%202016%20Accepted.docx?sequence=1 onlinelibrary.wiley.com/doi/full/10.1002/ajmg.c.31546
@jackiejoe56665 жыл бұрын
@@katvtay That second link leads to an error page. Do you have an update link or know the name of the paper?
@katvtay5 жыл бұрын
Jackie Joe Thanks for letting me know. Here is the second article, “Gastrointestinal involvement in the Ehlers-Danlos syndromes.” onlinelibrary.wiley.com/doi/full/10.1002/ajmg.c.31546
@jackiejoe56665 жыл бұрын
@@katvtay Perfect thanks!
@DVD9277 жыл бұрын
Who thumbs this down? There's good information here. Well thumb it down, be in denial and you or your loved one will suffer because of your attitude.
@daviddrysdale88665 жыл бұрын
Sadly Darla you will find Idiots - like bad gut bacteria :)
@asabovesobelow79818 жыл бұрын
ty 4 this info.. i so appreciate it.. dealing with Crohns disease since age of 12 or so.. permanent ileostomy since 1991.. in 6 different locations on m abdomen since that initial surgery.. just recently figured out i have EDS as well and my daughter and grand daughter.. i am tryin to learn as much as i can.. sitting here with a terrible stomach ache.. im used 2 this.. :/
@GrimesArtz8 жыл бұрын
Same here every single day abdominal pain, idk if I actually have this because I lack nutrition but every time I eat I feel sick
@asabovesobelow79818 жыл бұрын
ugh i'm sorry u are suffering as well.. hugs
@Scrambles17 жыл бұрын
I would love to chat with you, we have the same issues, except I just got rid of my ileostomy. mycatssuck1109@gmail.com drop me a line hun tx steph
@conniegarvie11 ай бұрын
I feel for you. I also passed on my hEDS, to two of my daughters and both of my grandchildren. I truly wish I hadn't. I pray that they'll have an easier time than I've had. I wasn't diagnosed until after my youngest daughter was diagnosed. I was three days past my 60th birthday!
@edeneverly25736 жыл бұрын
Is there a link to an actual paper I assume this was part of the papers done? Because if I don’t get something in my hands to snap my docs out of their seeming outright refusal to understand this, I’m really not sure what’s going to happen to me. All I know is I’m miserable and I can’t imagibe living like this for years to come. Seriously, I refuse to believe there isn’t someone who can review this with me and come up with a plan to help me eat and know how to better handle my issues, which cause me unbearable situation. Something tells me if I just gave them this link they’d never actually bother to watch. Thanks.
@TheEhlersDanlosSociety6 жыл бұрын
Look for “Gastrointestinal involvement in the Ehlers-Danlos syndromes” on www.ehlers-danlos.com/2017-eds-international-classification/#article - there are many other GI/EDS papers, but that one was part of the March 2017 American Journal of Medical Genetics and is probably the most authoritative review.
@katvtay6 жыл бұрын
Yes, I found just one and stopped there, but there seem to be many: onlinelibrary.wiley.com/doi/full/10.1002/ajmg.c.31546 I first found just the abstract of this paper by going to pubmed.com and searching “EDS Aziz” and looked for publishings from Qazim Aziz (who is giving this lecture). Since pubmed did not have the full article, I searched on google using the title from pubmed and Aziz. That’s the trick that works much of the time if you find an article on pubmed that does not show the entire publication. Good luck.
@katvtay6 жыл бұрын
Here’s another good one: qmro.qmul.ac.uk/xmlui/bitstream/handle/123456789/18325/Aziz%20Gastrointestinal%20disorders%20in%20joint%20hypermobility%202016%20Accepted.docx?sequence=1 Like the first I posted, I first found it on pubmed.com, only saw the abstract, then googled the title (this time didn’t even add Aziz’s name because the title was so specific), and the full article was available elsewhere. There are plenty more articles too. It amazes me doctors buck at this sort of thing because they can go to pubmed or other online journals and read full articles easily using their ID. It’s all right there for them!
@Hypo11003 жыл бұрын
Healthy keto and lectin free diet healed my gut and after that my EHD🙏🏼. So, it is the other way around🍀
@maggiemayalwayz87598 жыл бұрын
Thank you.
@b0g_dyke3 жыл бұрын
You have not idea how helpful this is thank you
@sharonrose1588 жыл бұрын
Very helpful ,thanks
@susantheobald6486 жыл бұрын
Fabulous thank you!
@Scrambles17 жыл бұрын
I have EDS and severe Crohns. So this makes a lot of sense to me.
@kumikoo004 жыл бұрын
If the pain gets chronic and you get central sensitisation and pain is all over in high levels you have no choice but to go to opiates.... keep that in mind too!
@Hansen239002 жыл бұрын
When is a feeding tube suggested?
@helentompkin-puzey32238 жыл бұрын
thanks Lelly
@TrudySchwartzBurrill5 жыл бұрын
Thank you. Can you explain why I doctors seem to care about this. I tell a doctor and they roll their eyes. Its serious. I have been dealing with this for so long and it's taken it to get as bad as it has to get anyone to really start trying to figure it out. He asked me right before an endoscopy with ECRP. I have air in my biliary tree in my liver. I have a very bad rectocele. My son has Marfan syndrome. Is it common that this is genticallically transferred to one another via birth? Would Marfan and EDS be considered cousins? Neither of us have been genetically tested. I have had some blood work that came up negative but non conclusive. My son hasn't gotten anyone to do any testing. If him it's on the outside there are visible signs..
@stowesuz4 жыл бұрын
When you
@stowesuz4 жыл бұрын
Trudy Schwartz-Burrill when your son was diagnosed with Marfan didn’t people explain his condition to you, as well as the relationship with EDS.? I am 75 now and was only diagnosed at 60. Never heard of these problems but was going crazy with problems with bladder, gut, eyes, bursa pain in hip and sit bones, wrist pain, more... i have had two spontaneous ruptures of my colon followed by serious surgeries as well as a laminectomy for a cyst on my spinal chord. I have good doctor who understands EDS but too late. My advice is get online and learn what you can - then seek out a doctor as close to you as possible. You may have to wait for awhile for an appointment, but it will be worth it. All the best, virtual hugs!
@Scrambles15 жыл бұрын
I have EDS and Crohns. Horrible combo!
@jno8055 жыл бұрын
Watching this while bloated feeling lol. I have to stop drinking carbonated drinks.
@michellec31007 жыл бұрын
My EDS child has gastroparesis and constipation. Fallen down transverse colon sitting on uterus, small bowel loops bunched up in small pelvis - which is dismissed by radiologist and upon showing gastroenterologist dismissed as 'some have that'. NOW QUESTION: her pain is in one certain right lower abdo/pelvis spot (appendix out now, no change in pain), no ovarian cyst as it always easily would like to be blamed on, and it seems to get worse when eating nuts or quinoa and I really wonder why. Meat is anyway a no go. Every 'normal' movement (walking) or swimming make it worse for days and weeks (pain from 6/10 up to 9/10 unable to get out of bed). So....hm. Probiotics did nothing (changed different brands, mixes, even used bac.lateropsorus, e.c.1917), low FODMAP does nothing (in contrary, too many grains in it, lactase/fructase/maltase enzymes in gut mucosa normal anyway, no surprise there). So be careful with those general advices. I don't think they work for every EDS dislocated, malfunctioning intestine. Soft stool, yes, and still the pain just doesn't go below 6/10. I would love to have a non invasive MRI angiogram and venogram, to exclude squeezing or pooling, nope, not done because 'can't be'. I think there is nothing that can't be. Please be open minded everyone.
@tomjones21575 жыл бұрын
Why is meat a no go? Meat is so high density in good animal fats and proteins, it provides everything I need while relieving pressure on the bowel. My digestive EDS symptoms dropped by a huge % when I switched my diet to mostly meat.
@crystalgilliam3006 Жыл бұрын
Why are we struggling to get the right doctor? Every doctor we talk to says these are not symptoms of EDS.