Gastrointestinal and eating problems in women with Ehlers–Danlos syndromes

Baeza-Velasco, Carolina; Lorente, Sonia; Tasa-Vinyals, Elisabet; Guillaume, Sébastien; Mora, Maria Soledad; Espinoza, Paola

doi:10.1007/s40519-021-01146-z

Cited by 18 publications

(13 citation statements)

References 47 publications

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“…Suggesting mothers place a glass of water on a table or nightstand where they will be feeding their infant at the breast can help them remember to maintain adequate hydration. Gastrointestinal effects are often dismissed as “stress-related” stomach issues and can be difficult to separate from stress related somatization [ 50 , 51 ] It is also important for mothers suffering the gastrointestinal aspects of EDS to be monitored for malnutrition and weight maintenance during lactation. Individuals with gastrointestinal symptoms may benefit from advice from a nutritionist.…”

Section: Discussionmentioning

confidence: 99%

Considerations for lactation with Ehlers-Danlos syndrome: a narrative review

Francis

Dickton²

2022

Int Breastfeed J

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Background Ehlers-Danlos syndrome (EDS) is a rare genetic connective tissue condition that is poorly understood in relation to lactation. As diagnostic methods improve, prevalence has increased. EDS, a disorder that impacts connective tissue, is characterized by skin extensibility, joint hypermobility, and fragile tissue which can affect every organ and body system leading to complications during pregnancy, delivery, and the postpartum period. Traits of this disease can cause mild to severe physiologic and functional obstacles during lactation. Unfortunately, there is little clinical evidence and minimal guidance for lactation management, and providers may feel uncomfortable and hesitant to address these concerns with patients due to a lack of readily available resources on the subject and inexperience with such patients. This narrative review describes and discusses the types of EDS, identifying symptoms, considerations, and precautions for care providers to implement during lactation and breastfeeding. Methods An electronic search of relevant citations was conducted using the databases Cochrane, PubMed, and Google Scholar from 1 January 2000 to 1 November 2021. Search terms used were Ehlers-Danlos syndrome, Hypermobility Syndrome, breastfeeding, lactation, breastmilk expression, breastmilk collection, human milk expression, human milk collection, and infant feeding. The search of these databases yielded zero results. As no research articles on EDS were directly related to lactation, this narrative review includes articles found that related to the health of mothers relevant to maternal function during lactation. Discussion For the healthcare provider, identifying characteristics of EDS can improve the management of lactation challenges. Mothers may experience generalized symptoms from gastrointestinal distress to fatigue or chronic pain, while they also may suffer from more specific joint complaints and injuries, such as dislocations / subluxations, or skin fragility. Such obstacles can generate impediments to breastfeeding and create unique challenges for breastfeeding mothers with EDS. Unfortunately, new mothers with these symptoms may have them overlooked or not addressed, impacting a mother’s ability to meet her breastfeeding intentions. While there are some published research manuscripts on EDS and pregnancy, there is a lack of information regarding breastfeeding and lactation. Additional research is needed to help guide EDS mothers to achieve their breastfeeding intentions.

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Section: Discussionmentioning

confidence: 99%

Considerations for lactation with Ehlers-Danlos syndrome: a narrative review

Francis

Dickton²

2022

Int Breastfeed J

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“…Such gastrointestinal symptoms, in addition to persistent fatigue, muscle cramps, and joint pain, can primarily be attributed to anorexia nervosa (24). Indeed, gastrointestinal symptoms and esophagitis are very common in patients with hEDS, resulting in nausea and vomiting (26)(27)(28). Dysphagia, fragility of the oral mucosa, and smell and taste abnormalities as EDS complications, can lead to food selectivity and disordered eating patterns (23).…”

Section: Anorexia Nervosa and Edsmentioning

confidence: 99%

“…Neurodevelopment disorders (11)(12)(13)(14)(15)(16)(17)(18)(19)(20)(21)(22) Anorexia nervosa (12,(23)(24)(25)(26)(27)(28)(29)(30) Addiction (33,34) Anxiety disorders (35)(36)(37)(38)(39)(40)(41)(42)(43) Mood disorders (17,37,(45)(46)(47)(48)(49)(50) Personality disorder (42,49,64)…”

Section: Disease Referencesmentioning

confidence: 99%

Ehlers-Danlos Syndrome in the Field of Psychiatry: A Review

2022

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Ehlers-Danlos syndrome (EDS) comprises a series of rare hereditary connective tissue diseases characterized by joint hypermobility, joint dislocation, and hyperextensibility of the skin, as well as cardiovascular involvement. EDS is often associated with chronic widespread physical pain, which can lead to psychological pain. Poor awareness and limited diagnosis of EDS and related symptoms result in decreased self-esteem and confusion regarding physical sensation. Furthermore, EDS imposes substantial psychological burden on patients due to exercise restriction, scars, keloids, and subcutaneous fat accumulation on the extremities, which leads to parental overprotection and bullying experiences from other children at school age. Recent large-scale studies have suggested that patients with EDS have a higher risk of mood disorders than the general population. Other cohort studies indicated high prevalence of anorexia nervosa, addiction, obsessive compulsive disorder, and anxiety disorder were found in patients with EDS. Case reports instead indicated that some psychiatric disorders were secondary symptoms due to physical problems from EDS. Therefore, psychiatrists must be more knowledgeable and proactive about EDS in their practice. We review the previous case reports and literature for patients with EDS, along with our own case of complicated psychiatric problems, which are strongly related to early stressful situations through childhood and adolescence. This is to aid general psychiatrists in the discussion of appropriate medical management in such infrequent, yet challenging conditions.

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“…Appetite is often reduced (7,8) due to taste disorders often linked to changes in smell and difficulties in swallowing but on the opposite appetite can also increase (polyphagia) due to the loss of the feeling of satiety. Alterations of the sense of thirst are also possible with polydipsia which should trigger a search for a pituitary origin in the context of the diffuse attack of the connective tissue.…”

Section: Description Of the Digestive Manifestations Observed In Ehlers-danlos Diseasementioning

confidence: 99%

Ehlers-Danlos Syndrome (EDS) : A Common and often Disregarded Cause of Serious Gastrointestinal Complications in Children and Adults

Hamonet

Delarue²,

Lefèvre³

et al. 2021

MRAJ

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Ehlers-Danlos is a hereditary disease of the whole connective tissue initially described by dermatologists (Tscherchnogobov Moscow 1892, Ehlers, Copenhagen, 1900, Danlos, Paris, 1908). They emphasized the joint hyperlaxity and stretchiness of the skin which has long summed up the clinical expression of this entity. In recent decades, many other manifestations have been described and gradually identified, mainly by rheumatologists (Grahame, London, 1960). Several of them concern the digestive tract, mainly gastric reflux and constipation. They can be the cause of serious accidents: bronchial flooding by gastric reflux or aspiration, intestinal obstruction, hernial constriction, eventration, intestinal rupture, peritonitis of vesicular or appendicular origin, hemorrhages. It is important that gastroenterologists know how to link these manifestations to their etiology in order to adapt treatments, prevent iatrogenic accidents and direct the patients towards the treatment of other manifestations of Ehlers-Danlos disease. Nine clinical signs, including digestive manifestations, allow diagnosis by their significant grouping. The proof of hereditary origin is based on the identification of other identical cases in the family,, even if they are paucisymptomatic. A person affected by the disease systematically transmits the disease to all his children. We have verified this in all our patients.

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Gastrointestinal and eating problems in women with Ehlers–Danlos syndromes

Cited by 18 publications

References 47 publications

Considerations for lactation with Ehlers-Danlos syndrome: a narrative review

Considerations for lactation with Ehlers-Danlos syndrome: a narrative review

Ehlers-Danlos Syndrome in the Field of Psychiatry: A Review

Ehlers-Danlos Syndrome (EDS) : A Common and often Disregarded Cause of Serious Gastrointestinal Complications in Children and Adults

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