Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 Mar 14;13(6):636.
doi: 10.3390/healthcare13060636.

How Do Patients with Hypermobile Ehlers-Danlos Syndrome Cope with This Medical Condition? An Analysis of Autobiographical Narratives in Relation to Pain Perception and Affect Regulation Capabilities

Alessia Renzi  1 , Claudia Celletti  2 , Michela Di Trani  1 , Marta A S Vizzini  1 , Lorenzo Colaboni  1 , Giada Petronelli  3 , Massimo Pasquini  4 , Filippo Camerota  3 , Rachele Mariani  1
Affiliations

How Do Patients with Hypermobile Ehlers-Danlos Syndrome Cope with This Medical Condition? An Analysis of Autobiographical Narratives in Relation to Pain Perception and Affect Regulation Capabilities

Alessia Renzi et al. Healthcare (Basel). .

Abstract

Background/objectives: Hypermobile Ehlers-Danlos syndrome (hEDS) is the most common form of EDS, characterized by joint hypermobility, skin findings, and joint pains or recurrent dislocations that may also be associated with other several extra-articular symptoms. A deficit in the affect regulation represents a risk element in the development of both physical and mental health, as well as in a greater pain perception. The present study aims at exploring the associations between linguistic characteristics associated with different autobiographical memories and affect regulation and pain measures in patients affected by hEDS. A further aim is to explore the possible differences in linguistic measures between different episodes.

Methods: Twenty-five patients with hEDS diagnoses (mean age = 38.32; SD = 17.00; 23 female) in treatment at the Physical Medicine and Rehabilitation Department of Umberto I Hospital in Rome completed a socio-demographic questionnaire, the Difficulties in Emotion Regulation Scale (DERS), the 20-item Toronto Alexithymia Scale (TAS-20), and the Brief Pain Inventory (BPI), as well as an interview aimed at collecting memories regarding neutral, positive, and negative events and the medical condition. The transcriptions of the interviews were analyzed using a computerized linguistic measure of the referential process (RP).

Results: A correlational analysis showed several significant associations among the linguistic measures, affect regulation, and perception of pain, applied to neutral, positive, and disease condition narratives. Only few significant associations emerged regarding the negative episode. Moreover, significant differences emerged between the neutral event compared with the positive, negative, and diagnosis episodes, especially with the latter.

Conclusions: The present findings seem to confirm the association between affect regulation, pain, and linguistic measures, sustaining an elaborative process. Specifically, the experience of chronic pain associated with the discovery of the rare disease becomes a meaningful experience in one's life condition and supports the ability to cope with the experience of chronicity.

Keywords: affect regulation; autobiographical memories; hypermobile Ehlers-Danlos syndrome; linguistic characteristics; pain; referential process.

PubMed Disclaimer

Conflict of interest statement

The authors declare no conflicts of interest.

References

    1. Malfait F., Castori M., Francomano C.A., Giunta C., Kosho T., Byers P.H. The Ehlers–Danlos syndromes. Nat. Rev. Dis. Primers. 2020;6:64. doi: 10.1038/s41572-020-0194-9. - DOI - PubMed
    1. Malfait F., Francomano C., Byers P., Belmont J., Berglund B., Black J., Bloom L., Bowen J.M., Brady A.F., Burrows N.P., et al. The 2017 international classification of the Ehlers–Danlos syndromes. Am. J. Med. Genet. Part C. 2017;175:8–26. doi: 10.1002/ajmg.c.31552. - DOI - PubMed
    1. Tinkle B., Castori M., Berglund B., Cohen H., Grahame R., Kazkaz H., Levy H. Hypermobile Ehlers–Danlos syndrome (a.k.a. Ehlers–Danlos syndrome Type III and Ehlers–Danlos syndrome hypermobility type): Clinical description and natural history. Am. J. Med. Genet. Part C. 2017;175:48–69. doi: 10.1002/ajmg.c.31538. - DOI - PubMed
    1. Morlino S., Castori M. Placing joint hypermobility in context: Traits, disorders and syndromes. Br. Med. Bull. 2023;147:90–107. doi: 10.1093/bmb/ldad013. - DOI - PMC - PubMed
    1. Castori M., Camerota F., Celletti C., Grammatico P., Padua L. Ehlers–Danlos syndrome hypermobility type and the excess of affected females: Possible mechanisms and perspectives. Am. J. Med. Genet. Part A. 2010;152A:2406–2408. doi: 10.1002/ajmg.a.33585. - DOI - PubMed

LinkOut - more resources