My team of doctors is helping me lead a healthier life with EDS

I tend to get a little nervous before doctors’ appointments, whether they’re in person or virtual. One reason is that I want to make the most of the time I have. I want to be able to talk about my symptoms, discuss any new issues, and ask questions.

I also never imagined I would need a full team of doctors supporting me until I was older, but over the past couple of years, I’ve learned that having a caring, multidisciplinary team is crucial to living as normal and healthy a life as possible with Ehlers-Danlos syndrome (EDS), specifically the hypermobile type (hEDS). So, while appointments make me nervous, I’m incredibly grateful for my care team. They are an invaluable part of my ongoing care. ​

Last week, I met virtually with my EDS specialist. She is based on the other side of Montana, but bringing her on board has been so beneficial, and last week she recommended I talk with my primary care provider (PCP) about a potential new care plan. One of her thoughts excited me: supplemental nighttime oxygen, something my sleep doctor hadn’t brought up before.

​With hEDS, my weak throat muscles can collapse while I sleep, causing sleep apnea. The gold standard of treatment is a CPAP machine, which I am unable to tolerate, unfortunately. The forced air, no matter how light and humid, leaves me with a persistent sore throat and cough, and sleeping with an awkward mask strapped to my face was nothing short of a battle of wills for me.

I met with my PCP after that, and we talked in detail about waking up frequently at night and the effects of not getting a restful night’s sleep. Now I have a plan of action to see whether supplemental nighttime oxygen will benefit me.

Recommended Reading

July 17, 2026 News by Margarida Maia, PhD

Study finds higher allergy rates in children with hypermobile EDS

Being prepared

Between appointments, I keep detailed, well-documented notes to share with both my EDS specialist and my PCP. Based on those notes, they let me know whether I should also follow up with my cardiologist, neurologist, gynecologist, and gastroenterologist.

My gastrointestinal (GI) issues are worsening and remain the least managed part of my EDS trifecta battle — that is, EDS, mast cell activation syndrome (MCAS), and postural orthostatic tachycardia syndrome (POTS). My top priority, aside from breathing continually through the night, is to stabilize these chronic GI flares and improve my quality of life.

I wish I could say that I’ve had as much success managing the GI part, but I haven’t. For most of my life, my symptom logs and tears of frustration were dismissed as a result of stress and anxiety, or — my personal favorite — because I was “too young,” as if my age somehow cancels out what I’m actually going through. I’ve spent my life struggling with upper and lower GI issues, and right now, I’m reduced to taking Miralax, as needed, and trying to manage stress. I’ve been prescribed the latest and greatest motility pills, but MCAS makes most medicines nearly impossible to tolerate.

It’s been maddening to feel alone in my GI journey, but I’m happy I have my EDS doctor, who thinks that getting my histamine response and POTS under control should help provide some relief from my symptoms. But I do want to find a GI doctor who can work with my EDS-knowledgeable team to find better ways to manage the severity of my GI issues.

Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.