Emergency Care for Individuals with Ehlers Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD)

A review of key topics presented during the EDS ECHO Emergency Care Summit, held remotely on 16th March 2024. 

Author: Nicola Humphry1 

  1. Independent Medical Writer, Nottingham, UK  

Disclosures: Humphry has declared no conflicts of interest. 

Acknowledgements: We would like to thank all the speakers at the Emergency Care Summit for taking the time to share their experience and expertise with the audience: Prof. Lara Bloom, Assoc. Prof. Dr. Alan Hakim, Dr. Helen Cohen, Dr. Sherene Shalhub, Prof. Qasim Aziz, Prof. Peter Rowe, Dr. Isabel Huang, Dr. Alissa Sheldon, Rebecca Hixson, Dr. Dacre Knight, Dr. Daniela Vaca, Nancy Block, and Emily Block.  

Support: EDS ECHO is a series of programs, summits, and courses for healthcare professionals across all disciplines who want to improve their ability to care for people with Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD) and associated symptoms and conditions. Enhancing care for people with all types of EDS and HSD through case-based discussions, sharing knowledge, and expert updates is at the heart of EDS ECHO.  

Keywords: Ehlers-Danlos syndrome; EDS; hypermobility; joint hypermobility; hypermobility spectrum disorder; HSD; emergency care; ECHO 

Meeting summary 

The Emergency Care Summit was a virtual event organized by The Ehlers-Danlos Society as part of The Ehlers-Danlos Society’s EDS ECHO program.. The Summit addressed the unique challenges and considerations in providing emergency care for individuals with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). 

EDS is a group of 13 individual heritable conditions which affect connective tissue. The most common type of EDS  is hypermobile EDS (hEDS), which is associated with joint hypermobility, joint instability, tissue fragility, and chronic pain. People with symptomatic joint hypermobility that does not meet the diagnostic criteria for hEDS may be diagnosed with HSD, which is associated with many of the same symptoms and comorbidities as hEDS. 

Chaired by Prof. Lara Bloom, President and CEO of The Ehlers-Danlos Society, the event welcomed healthcare professionals (HCPs), individuals with EDS or HSD, and their caregivers, for sessions covering various topics to enhance awareness, preparedness, and effective management during emergencies. 

The objectives of the event were: 1) to increase awareness and knowledge among HCPs about emergencies related to EDS and HSD; 2) to empower patients living these conditions to manage emergencies and advocate for their own care effectively; and 3) to facilitate collaboration and information exchange between HCPs and patients to improve emergency care for individuals with EDS and HSD. 

GENERAL CONSIDERATIONS AND MUSCULOSKELETAL CONCERNS 

Emergency Care in EDS and HSD: An Overview 

Alan Hakim, a consultant rheumatologist and acute physician based in London, UK emphasised that if an individual’s health has rapidly changed for the worse, and the situation seems severe and uncontrolled, then this generally constitutes an emergency. This means that in the emergency department (ED) of a hospital, staff will generally be focused on stabilising the patient before considering the differential diagnosis. 

If a patient has a diagnosis of EDS or HSD, Hakim stressed that their presenting emergency may not be related to this diagnosis. For example, if a patient is experiencing symptoms that are much more severe than is usual for them with EDS or HSD, it is inappropriate to assume that this is due to their condition. 

When assessing a patient with EDS or HSD in the ED, it is useful for staff to know the patient’s diagnosis, previous medical emergencies, complications, current treatments, social circumstances, doctors in the patient’s team, and what treatments/interventions have or have not worked for the patient in the past. If a patient or their carer has this to hand in an emergency, it can be hugely helpful. 

Hakim described several general characteristics that are common to people with EDS or HSD, which should be considered by clinicians in the ED, shown in Figure 1 

Figure 1: EDS/HSD considerations for HCPs in the ED 

Content taken from recommendations made at the EDS ECHO Emergency Care Summit, 2024. 
EDS, Ehlers-Danlos syndrome; HSD, hypermobile spectrum disorder; IV, intravenous saline. 

Acute Injuries and Pain 

Helen Cohen, a consultant in rheumatology and chronic pain at the Royal National Orthopaedic Hospital in Stanmore, UK, explained that pain mechanisms in EDS can be biomechanical (dislocations, ligamentous rupture, tendon injuries), musculoskeletal (muscle irritability/tone, deconditioning, chronic overuse injuries), or related to nerve impingement (entrapment or compression). 

Cohen emphasized that individuals with hypermobility may be particularly prone to acute injuries, and some may experience recurrent subluxations (partial dislocations) and dislocations, especially in the shoulders, hips, and knees. Due to irritable muscles, they may experience muscle spasms which cause pain and prevent joint relocation. Many individuals with EDS or HSD have noisy joints, but Cohen stressed that not every ‘click’ indicates a dislocation. Joint subluxations and dislocations in hypermobile individuals do not usually require aggressive manipulation or strong pain medication, and individuals with recurrent dislocations should try to learn their triggers, and develop a dislocation plan to avoid frequent visits to the ED. 

Cohen described the key features of a self-management dislocation plan as:  

  • Keep calm and breathe normally to keep the muscles relaxed 
  • Support the joint in a comfortable position 
  • Take pain medication that works for the individual 
  • Use heat, distraction, or massage as needed until the joint can be relocated 
  • Once the joint is back in position, use rest, ice, compression, and elevation (RICE) techniques, and careful splinting or support, but avoid prolonged immobilisation 

However, Cohen recommended that if a dislocated limb goes cold, discoloured, or very numb, patients should visit the ED.  In the ED, an x-ray is not normally required for a recurrent dislocation, and EDS/HSD patients should avoid the high-potency opiates or nitrous oxide often used for dislocations in patients without hypermobility. 

VASCULAR AND GASTROINTESTINAL COMPLICATIONS 

Vascular Complications and Emergency Room Challenges and Solutions  

Vascular EDS (vEDS) is a rare type of EDS associated with life-threatening complications (Fig 1).1 Sherene Shalhub, Associate Professor of Vascular and Endovascular Surgery, and Molecular and Medical Genetics, at the Oregon Health & Science University, USA, emphasised that the lack of knowledge about vEDS in the ED is considered one of the most frustrating aspects of a vEDS diagnosis.2  

She explained that a major challenge of vEDS is that patients can present at the ED with vascular conditions usually only seen in older adults. For example, while stroke in older adults is commonly due to atherosclerotic arterial blockages, in patients with vEDS, arterial blockage can be caused by platelet aggregation.3 Severe head pain in vEDS can also be caused by a carotid cavernous fistula.4  

Chest pain in vEDS can be caused by aortic dissection, aneurysm rupture, myocardial infarction, spontaneous coronary artery dissection, or acute pneumothorax/haemothorax, all of which require emergency medical care.5–8 Abdominal pain may be related to aortic dissection (which can lead to malperfusion of the intestines), aneurysm rupture, or intestinal perforation,7,9 as well as more common conditions such as appendicitis or gall bladder inflammation. In addition to kidney stones, flank pain in these patients can be caused by kidney infarctions due to arterial dissection, or splenic artery aneurysm.10,11 Shalhub explained that severe, acute limb ischemia pain in vEDS may be caused by malperfusion related to thrombosis or aortic dissection, or from local dissection into the external or common iliac artery. 

She suggested that some of the challenges for vEDS patients in the ED could be alleviated if the primary care team for the patient is notified when the patient is on their way to the ED. She emphasised that further training for ED physicians is critical, as well at the use of electronic health record alerts to improve communication with emergency teams.  

Gastrointestinal Emergencies 

Qasim Aziz, Professor of Neurogastroenterology at Barts and the London School of Medicine and Dentistry in London, UK, described the main gastrointestinal (GI) symptoms associated with emergencies in patients with hEDS or HSD as vomiting (experienced by 14–25% of patients), dysphagia (11–63% of patients), and abdominal pain (56–100% of patients).12 

Joint hypermobility has been shown to correlate with inguinal and hiatus hernia occurrence,13–15 and if a hernia becomes strangulated, reduced blood supply to the bowel or stomach can cause severe pain and intestinal obstruction. Anorectal anatomical abnormalities are also more common in people with joint hypermobility than those without,16 and can lead to obstructed defaecation or rectal prolapse.16,17 

Aziz explained that he sees overflow diarrhoea more commonly in patients with hEDS vs patients without, and this can become a medical emergency in severe cases. He has also seen anterior cutaneous nerve entrapment syndrome in hEDS patients, which is associated with severe pain in the abdominal wall. Gastrointestinal effects from a flare of mast cell activation syndrome (MCAS), such as diarrhoea, nausea, and vomiting, may also require emergency care. Some hEDS patients in Aziz’s clinic also experience abdominal migraine, which can present as cyclical vomiting syndrome18 with severe abdominal pain, and this condition has been linked to hypermobility.19,20 Vascular entrapment syndromes may also occur in patients with hEDS,21 resulting in bowel obstruction, malperfusion of the kidney or bowel, or pelvic pain and congestion. 

People with vEDS are at particular risk of GI emergencies such as spontaneous gastrointestinal perforation and abdominal aortic aneurysm rupture, which require emergency hospitalisation and surgical repair.9,22 In addition, patients with comorbid postural orthostatic tachycardia syndrome (POTS),17 can also experience chronic nausea, vomiting, abdominal pain, bloating, diarrhoea and severe constipation.17,23,24 

Common ED Presentations of Circulatory Dysfunction in EDS and HSD 

Peter Rowe, Professor of Paediatrics at the Hopkins University School of Medicine, Baltimore, USA, emphasised that orthostatic intolerance is present a large proportion (41–100%) of individuals with EDS or HSD, particularly in hEDS.25,26 

The priority for ED staff when presented with any patient with transient loss of consciousness (tLOC) is to determine whether there is a serious underlying cause, such as cardiac arrhythmia, blood loss, seizure, subarachnoid haemorrhage, a psychiatric cause, or a systemic/metabolic cause that may be drug induced. Clinical clues for these conditions include persistent abnormalities in heart rate and blood pressure, elevated respiration rate with low oxygen saturation levels, valvular murmur, carotid bruit, abnormalities in the neurological exam or in deep tendon reflexes, electrocardiogram or complete blood count (CBC) abnormalities, or electrolyte imbalances suggestive of adrenal insufficiency.  

Less serious, and more common causes of tLOC include reflex syncope, orthostatic hypotension, dehydration, or medication. The Canadian Syncope Risk Score can be used to classify patients presenting with tLOC, and can help with triage in the ED.27 

For a low-risk patient with EDS or HSD who presents to the ED with circulatory dysfunction, Rowe recommended an initial approach of administration of two litres of warmed IV normal saline over 1–2 hours.28,29 In his experience, this approach leads to improved tolerance of upright posture, general symptomatic improvement, and fewer acute recurrences. 

Rowe discussed four case examples that might present to the ED with circulatory dysfunction associated with EDS or HSD, including: 1) a low-risk patient with a vasovagal syncopal event and hEDS; 2) a patient with a recurrent syncope without prodromal symptoms, associated with cervical instability; 3) a patient with HSD and POTS, presenting with light-headedness, tachycardia, and urticaria consistent with MCAS; and 4) a patient with a history of syncope, and disabling pelvic pain with orthostatic worsening, associated with pelvic venous insufficiency.  

PRACTICAL TOOLS FOR EMERGENCIES 

Medical ID and Alert Systems: Enhancing Emergency Awareness 

Isabel Huang, a physical medicine and rehabilitation physician at the University of Texas Southwestern Medical Center, USA emphasised the value of medical monitoring devices for patients in the community, including personal medical alert systems for emergencies, medical tracking devices to monitor blood pressure, heart rate and rhythm, oxygen saturation, glucose levels, sleep quality, etc. Since most hospitals do not automatically share information, it is important for a patient with specific medical needs to be prepared to monitor their own health, and to self-advocate in an emergency. 

To this end, Huang recommended that people with EDS orHSD carry a single page of critical information, in concise language, that they can share with medical professionals in an emergency. Huang also stressed that hypermobile individuals have variable outcomes with treatment, so it can be helpful to keep track of what has worked and not worked for them previously. 

Emergency Care Preparedness for Caregivers: Supporting Loved Ones with EDS & HSD 

Alissa Sheldon, a licenced psychologist in Florida, USA discussed the ways in which psychologists and mental-health providers can help patients, families, and caregivers to cope with chronic illness and health challenges. She explained that mental health interventions such as cognitive behavioural therapy (CBT) can help people to develop coping strategies and pain management techniques, increase resiliency, improve mood and stress management, and increase compliance with other treatment protocols. 

Sheldon emphasised that approximately 11% of people with EDS have five or more HCPs,30 but that unfortunately, the challenge of maintaining connectivity between HCPs often falls to the patient or their loved ones. Therefore, people with EDS and/or their carers need to learn how to advocate for themselves across a variety of medical settings, and this can be facilitated by providing a clear and concise medical history, including current medications, HCPs, a brief clinical history, treatments that have worked/failed, allergies, additional facts such as good sites for IV placement, and documentation for any care permissions. She emphasised that it is often helpful to have a printed copy of this information available in advance. 

Sheldon advised carers of people with EDS or HSD to view providers as advocates rather than adversaries, and to remember that, as the main source of support for the patient, they can bring useful and/or comforting items to the ED, acknowledge the patients’ fears and frustrations, and remind them that their condition is variable. 

Community Voice: Pain Management for a Symptom Flare 

Rebecca Hixson, a hospice and palliative care clinical specialist nurse at Northwell Health, New York, USA, who also has EDS, discussed the nature of EDS and HSD pain, how to manage it at home, and when a visit to the ED might be required. 

Hixson explained that pain is a common symptom experienced by people with HSD or EDS. While it is often related to instability and inflammation of joints, muscles, and nerves, many people also have comorbid conditions that can cause pain, such as GI disorders, or migraines from POTS. 

Non-pharmacologic tools that can be used to manage flares31 of pain in EDS/HSD include support braces, gentle exercise, cold or heat therapy, massage, transcutaneous electrical nerve stimulation (TENS), and a support system that understands that needs can vary from day to day. Pharmacologic options can include over-the-counter or prescription-strength medications, but Hixon stressed that some people with EDS orHSD may have comorbidities that affect their tolerance of certain medications. For example, people with MCAS may not tolerate non-steroidal anti-inflammatory drugs (NSAIDS), and some people develop constipation or urination issues with opioids. Some patients find that oxygen can sometimes help relieve pain, and others find relief with low dose naltrexone. 

Hixon suggested that a person with EDS or HSD might seek urgent medical evaluation of their pain when they experience subluxations/dislocations, muscle weakness, inflammation, or injury from improper movement patterns.  

NAVIGATING HEALTHCARE IN EMERGENCY SITUATIONS 

Emergency Care in the USA: Insurance, Payments, and Healthcare Systems 

Dacre Knight, Assistant Professor of Internal Medicine and Medical Director of the Ehlers-Danlos Syndrome Clinic at the Mayo Clinic, USA discussed the complex landscape of emergency healthcare in the USA and how it is funded. He explained that the majority of the USA population (~47%) pay for their healthcare using private medical insurance through their employer.32 Government programs such as Medicare and Medicaid cover approximately 17% and 15% of the population, respectively, and roughly 9% of the population have no health insurance. 

One of the concerns with healthcare insurance in the USA is that insurance providers have ‘preferred’ healthcare providers/facilities (in-network). When a patient uses facilities that are out-of-network for their insurance provider, the cost charged to the patient is higher. However, since the choice of facility is not always in the control of the patient in an emergency setting, the ‘No Surprise Act’ passed by the US government in 2022 provides a degree of protection to emergency patients with private healthcare insurance. 

Dr Knight is confident that with further education programs such as ESD ECHO, and good guidance, it will be possible to minimise the need for patients to visit the ER for hEDS- and HSD-related issues. He stressed that it is the responsibility of a patient’s medical team to provide them with the knowledge to understand what is and is not an emergency for them. 

Getting Help with EDS and HSD Through Primary Care 

Daniela Vaca, a general practitioner (GP) and locum emergency medicine registrar in the UK, shared the challenges she has faced in primary care, as a person with EDS, and explained how a general practitioner can help to coordinate care for people with EDS orHSD. 

Vaca described the lack of a referral pathway in the UK for GPs who suspect EDS orHSD in one of their patients, and the long wait times for routine outpatient appointments in the NHS (≥6 months). She also emphasised a lack of awareness among both primary and secondary HCPs, difficulties with continuity of care in the primary care system in the UK, and the challenge of a primary care consultation that is generally restricted to 10–15 minutes. 

For a person with EDS orHSD, their GP is often their first point of contact. Vaca explained that they can arrange for non-urgent blood tests, x-rays, ultrasounds, and MRIs, and provide pain management. GPs in the UK can also access the Advice & Guidance Service to request specialist advice, which can be particularly useful while a patient is waiting for a referral. In addition, a GP can organise a multidisciplinary team meeting for a patient with complex needs if required. 

Agreeing an Emergency Care Plan 

Alan Hakim, a consultant rheumatologist and acute physician at The Harley Street Clinic in London, UK, emphasised that, ideally, individuals who regularly require urgent or emergency care should have an individualised emergency care plan that takes account of the gaps that exist between organisations in the urgent and emergency care landscape.  

For example, a care plan for a patient with EDS might cover management of an acute flare of cardiovascular autonomic dysfunction, an acute dislocation, or severe vomiting and abdominal pain, if these conditions are not responding to usual home treatment. Patients with high-risk forms of EDS such as vEDS will need a detailed care plan that also considers vasculopathy, and the risk of bowel rupture or uterine rupture in pregnancy. 

Hakim emphasised that setting up care plan pathways for patients with EDS does not set a precedent in the UK, as care plans already exist for patients with other conditions, allowing them direct access to eye clinics, maternity units, or cancer units, for example. He suggested that a care plan might allow a patient to avoid an unnecessary transfer to the ED, by using day care units or a speciality clinic instead. 

However, Hakim stressed that care plans are extremely difficult to set up because of the number of people that need to be involved, and the potential for legal or indemnity constraints. To achieve an emergency care plan, one person/team also needs to take the responsibility to build it and get all parties to agree to it.  

Medical History Template 

Nancy Block, a physiotherapist with a speciality in hEDS and HSD, and experience as an hEDS carer, and Emily Block, an occupational therapist with a speciality in chronic illness, who also has hEDS, both based in California, USA, stressed the importance of advance preparation for emergency care in the EDS/HSD population. 

The speakers recommended that people with EDS/HSD find out what facilities/resources their local hospitals have, and which hospitals are covered by their insurance plan. They emphasised the importance of carrying an up-to-date medical history summary (Fig. 2). 

Figure 2: Medical History Template 

This template was developed by Nancy and Emily Block. Copies can be obtained from https://www.ehlers-danlos.com/wp-content/uploads/2024/03/Emily_Nancy_Block_Medical_History_Template.docx  

Emergency care plan cards can also be carried, displaying critical information that may be needed in an emergency. For example: “Anaphylaxis – epi pen in red emergency pouch in purse. Administer immediately and call 911”. Medical alert items such as seatbelt covers, and jewellery may be useful to communicate specific medical needs in an emergency. 

The speakers recommended that people who regularly need to visit the ED keep a grab bag ready, and they stressed the importance of taking an advocate with you to the hospital, as they can provide emotional support and assist with clear and succinct communication if a patient is experiencing brain fog or severe pain. 

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