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Just as we have a very active role diagnosing and treating patients, our research agenda is equally important to improve our understanding of these disorders. In this research update, we will discuss new findings related to problems with voice, breathing, and swallowing in the hEDS/HSD population.
Over the past year, we asked patients coming into our EDS clinic to complete an intake questionnaire to help determine appropriate referrals to other specialists. Some questions addressed problems with voice, breathing, and swallowing to help identify patients who may be appropriate for a referral to our Ear, Nose, and Throat (ENT) providers – specifically a laryngologist and speech pathologists who specialize in voice, upper airway, and swallowing evaluation and therapy. We specifically asked about problems with hoarseness, short-lived episodes of breathing difficulty causing a sound on inhalation, and coughing when eating and/or drinking. We found that 22.5% of patients diagnosed with hEDS or HSD reported hoarseness, 33.9% of the same group of patients reported coughing when eating/drinking, and 27.0% reported short-lived episodes of breathing difficulty causing a sound on inhalation. We compared these percentages to previously-reported prevalences of similar symptoms in the general population, and found a significantly higher rate in our hEDS/HSD patients than was previously reported in the general population. We believe this suggests these issues are more prevalent in patients with hEDS and HSD. Further research is needed to determine associated factors that may contribute to an increase of these symptoms in this population. Additionally, further research should address the best treatment modalities and therapy techniques for people with hEDS and HSD. Stay tuned here for further research updates from the Mayo Clinic EDS Clinic. Have you had any issues with your voice, breathing or swallowing? Please share below!
Author: Stacey Menton, MM, MA, CCC-SLP
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I have had problems with choking and swallowing most of my life and several in my family have had the same issues. At times after choking, coughing, I have problems with getting air back in. My Granddaughter, age six has the same issues and after an endoscopy with biopsy was diagnosed with EOE. Renee Harkness
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3 ReactionsI have sudden, brief episodes of Shortness of breath with and without stridor. Stridor occurs more prone and when changing to upright position.
Yes extensively ……what I eat is now very curtailed but choking is very much less. I do have cold carbonated water very close at hand bec thats the only thing that stops it……I eat a very very how histamine diet…..I also have Mast Cell Activation Syndrome and my save was to go on the Carnivore Diet full time…….the Immunologist said I saved my own life doing that not to mention the quality of my life which is now very good. But mistakenly eating anything w any kind of acid in it or any histamine brings on MCAS episode and then the mucus in my throat and then the hoarse voice and coughing and choking……TOTALLY related…….I can no longer eat vegetables if I want to stay well. I only eat meat and poultry and eggs and salt / and water w monk fruit. And organic ginger in hot water. And I stay super healthy and never choke! I am 73 and could have really used this info a long time ago…..and btw inflammation was making me fat……I lost a lot of weight and kept it off as soon as I went on the Carnivore Diet/Shawn Baker…….a cardiologist. I am an O blood type which is founded on meat eaters…….I just went back to nature……what have you got to lose if you are really unhappy w your body’s reaction!!!
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1 Reaction@reneeharkness, have you also been diagnosed with eosinophilic esophagitis (EOE)? What treatment is being considered for your granddaughter?
I have never been tested for it and had never heard of EOE until my granddaughter was diagnosed. What gave her Dr.'s a clue was so many members of the family having swallowing issues. She has many food allergies as well which I was never diagnosed with either. I am almost 70 now and I don't know if it pays for me to get tested this late in the game or not. I am going to talk to my Dr. about it though. This has all come to light just recently. I have to eat very slowly, and I am always the last one done eating. But I have to chew my food thoroughly.
My granddaughter was supposed to take a pill of some sort, but she can't swallow them, and they have tried opening them and mixing them in food, but she has been unable to do that either. Since she has had so many swallowing/throwing up issues herself, she is very skeptical to try other things. As she gets older, they are recommending prednisone, but it doesn't sound like a real good option. I may get more information from my physician, when I see him.
Renee, as you are at the beginning of learning more about EOE, you may find these blog posts from Mayo Clinic EOE experts helpful
- Eosinophilic Esophagitis Blog https://connect.mayoclinic.org/blog/eosinophilic-esophagitis/
and this page on Mayo's main website:
https://www.mayoclinic.org/diseases-conditions/eosinophilic-esophagitis/symptoms-causes/syc-20372197
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Mayo Clinic is leading center for EOE research and clinical care.
I'm 64, have hEDS and likely vEDS and classical. The neurologist retired during pandemic and I've been searching for another EDS neurologist since then. They don't seem to exist in Dallas area. I have Esophageal reflux. No idea on the EOE this is the first I'm hearing about it.
I have a history of not being able to swallow when eating and drinking fluids. I drink water most of the time. My voice is hoarse, absent, or somewhat normal or can vary through out a day. It normally will not go to normal if it is hoarse. Breathing issues: when I wake up, my first breath rattles. Only time it does. I get the breastbone heaviness and pain but haven't been tested for MCAS. I have many of the symptoms. I recently started having breathing issues. Only several episodes and I'm keeping an eye on it.
Thanks for researching.
I have breathing, swallowing, and airway issues. My pharyngeal airway is VERY narrow. Even after multiple surgeries and procedures to try to help. I am really hoping I will get a response from you with some suggestions for what I might be able to do next. I’ll give you just a brief overview.
My breathing problems greatly exacerbated when as a teenager I had four healthy pre-molars extracted for retractive orthodontics. This made my oral cavity extremely small, as my teeth were forced inward, pushing my tongue back into my airway even more. I am now 56 years old and I am on disability. I have been diagnosed with UARS and OSA. In my first airway image CBCT scan the diameter of my airway at a small point was 2.9 mm around, compared to what it should be at 400 mm! I was basically breathing through a coffee stirrer for decades. This caused very pronounced forward head posture And all of the pain associated with that. I have had MMA surgery (double jaw advancement) which also included a genioglossus advancement (which twisted all my facia in my chin and has caused major problems since then). Even after these incredibly invasive surgeries, I still did not have room in my mouth for my tongue, so I had to find other options. I have had periodontal surgery with vertical cuts between each tooth, bone and gum graphs so that I could expand teeth outward into the new bone, and I have had a MARPE rapid expander.
I still struggle with breathing issues after all of that. I have trouble catching my breath, and the episodes can last months at a time. My airway is so small and compressed that I do not have an epiglottis. (actually, I believe I have one, but it is just smashed into the tissue of the airway, so it doesn’t stick out and do its job ) I choke very easily on food and water, even on my own saliva. I get air trapped in my chest and stomach and acid reflux from the way the narrow airway affects the different vacuums in my body.
I have tried CPAP. I have tried a mandibular advancement device. I’m at my wits end. I don’t know what else to do.
Also a note, after all those surgeries and procedures I am able to improve my posture somewhat because my head is not pushing forward as much as it used to. But what’s interesting now is that my nervous system is so trained to be on high alert from not being able to breathe that my muscles in my head and neck and jaw are constantly tense and images show that after so many years of having to contort myself to breathe, my spine is now pushed forward into the back side of my airway, which is making it even smaller.