I have developed swallowing issues in the last ten years I also was recently diagnosed with hmEDS at age 65 All my issues my entire life now make sense after this diagnosis

hEDS.. have tons of the issues that were mentioned here. Swallowing and choking has become a much more profound ongoing problem. Lump on throat and inability to clear, inability to swallow without holding my hand over my throat. My larynx is very Hypermobile, swings side to side, it wasn’t until this year that I found out this wasn’t normal. It can be horribly painful, it can become out of place, stuck, and cause me to choke, puke, puke and choke.. panic puke choke and manually pop my throat back into place… it’s dreadful.

When I talk too long or sing my throat hurts. My two daughters have EDS. I also have other issues but over the years i keep it under control by eating only natural, organic, None GMO food and products on my body. We are not crazy we are special and wonderfully made.

I have an issue where food gets stuck in my throat and won't go down. This is especially if im stressed or rushing. I think I have EDS, interesting to hear this is related.

Many thanks to all involved in this research, to Professor Birchall for this talk, and to the Ehlers-Danlos Society for this channel of science-based content and support.

I cannot count the number of times I have thought This is it

Thank you for covering this concerning symptom! It can be very stressful and frightening to have mysterious symptoms like the ones described in this video!

Amazing - thank you so much for this video. It's giving me answers to why I had so many throat and voice production problems as a singer which ultimately forced me to give up the profession. I can't wait to hear more about the results of the current studies! Thank you for specialising in this obscure little niche of hEDS that affects our lives so hugely.

This was very helpful. After I watched this, the next time I had the throat lump come back i tried some exercises for relaxing the hyoid bone. I'm seeing massive improvements in throat function and areas not directly connected.

Thank you so much for explaining., can't explain how helpful this information is for care givers / parents !!

Science bless you Prof Birchall and EDS society!❤ I started getting symptoms a few years ago with soreness and losing my voice. More recently I started having swallowing issues, interestingly first triggered by mint. There are so many symptoms that get very little explanation from doctors or not bothersome enough to seek answers. Thanks to videos like these I get possible answers and suggestions (I do make sure nothing else is going on)

This is so informative! I have most of these symptoms/issues, but the dr's I'm seeing wouldn't know any of this info. Thanks for the awareness and information for treatments.

I have hEDS and a bunch of allergies (especially to corn + man made scents) and sometimes when I am exposed to the wrong scent I get a pulsing pain in the front of my throat (near the thyroid) but my thyroid is ok. The pain pulses to my heartbeat. And if I go away from the area with the smell the pain goes away. I have no idea what this is + it only confuses the doctors.

I am just being diagnosed with hEDS, and I am now seeing how it might be affecting my children. My son had so many problems with eating as a baby. He would gag so easily, and that sometimes led to vomiting up whatever food he had already eaten. I had to do things like cut a macaroni into 3 pieces for him to eat one at a time at a year old to avoid this. At 18 months old we figured out he had a high palate and severe tongue tie. The tongue tie was cut and it immediately improved everything. He could eat so much better, but 10 years later he still has what we describe as an overactive gag reflex. Just coughing up a little phlegm from a cold can cause him to vomit up an entire meal. This video might explain a lot about what is going on with him. My son also had a severe speech delay with Childhood Apraxia of Speech. I know dyspraxia (which he also had) has been associated with hEDS, but is there any research into an association with Apraxia?

I hate EDS. No children, system wide defects and constantly being told how great I look. Flares. It’s soul crushing at times.

Yes!!

What are the tests called for checking my hyoid, larynx and vocal cords? Would I need a referral to go to an ent dr? Ive had my esophagus stretched 5 times, throat pain without swallowing pain, choking on food and even small pills, and my voice has always been too low even when i yell. Going to oral maxillofacial surgeon in October for TMJ. Just diagnosed 3 years ago for hEDS.

This would explain a lot! But what about the issue i seem to be having where, my throat feels squished and like it relaxes too much in various laying positions, sitting leaning my head down? Likewise, i can't lay on my back.

I have hEDS and just got diagnosed with Vocal Cord Dysfunction.

When I saw this video on Facebook I was hoping that you were going to talk about the collar bones and the sternum around the throat and how hypermobility EDS can affect the structure there resulting in a choking feeling. My daughter has been diagnosed with hypermobility EDS and I'm certain that I have it as well I have issues all over my body. Two or three months ago I felt like my right collarbone was out of place and raising too high on the front of my body. In other words I'm losing throat space. I have no idea where to turn. I was blowing up a balloon for my granddaughter yesterday and I had to look up at the ceiling to clear the space in my throat so that I could breathe enough to blow up a balloon. I'm certain that there is some structural changes going on. I had a CT scan that showed some disproportion on the right side collarbone and degenerative disc disease in my C2 and C3 vertebrae. Right now I don't have any of the problems you're describing here, except a feeling that I can't swallow food like steak and food that doesn't change shape when you eat it even well-chewed. I forced the food down before I realized what was going on. Can you advise what type of doctor I need to see. I've tried the emergency room at my local hospital and I saw an orthopedist who took x-rays and could not understand what I was trying to tell him. I've heard of problems where the ligaments with EDS don't support the head. And that's terrifying. Any advice on how to move forward would be appreciated. Thank you so much. I live in the United States and I know EDS diagnosis is behind the times here. ❤

I have classical eds, and my kyphoscoliosis is causing my kneck to collapse and push forward, resulting in what I believe is cranial instability. My throat reflex is really slow and have all these symptoms..

Whats the estimate prevalence of achalasia type disorders in EDS overall? Not sure if i missed that or not. Not a super official diagnosis but i am getting my esophagus stretched soon. I have a lot of gi issues as well (hEDS diagnosis) which included dysmotility from esophagus to colon, ruptures of congenital AVM's and history of bowel blockages, etc. My whole gi system is a mess. The AVM they told me i have are apparently called angioectasia. Weird part is im 22 with gastric angioectasia instead of intestinal. I also have the weird EDS issue that causes urinary retention and I have to self catheterize often.

I have hEDS & PoTS & I have a glued up throat all the time. This causes severe choking but I can't find any medical people who understand...or who can help.

This is a really useful video. I have HEDS and for the last 3 years I have had problems swallowing my saliva, it's noisy like squeezing a sponge. I choke, have phlegm in my throat all of the time and I struggle to breathe when I lay down. I also stop breathing in my sleep. My voice is always hoarse and I lose my voice completely when I have a cold. I can't get anyone to take me seriously, my Dr prescribed a ridiculous dose of omeprazole which made no difference. Ive had sleep studys done but I haven't been able to sleep long enough to get an accurate reading because the noise from my throat wakes me up and constantly swallowing to stop myself choking and I have had a lung function test. What would you suggest that I do as so far nobody seems to get it?

Interesting that there’s not a lot of data on children. My 13 year old definitely has problems with eating and swallowing with hEDS