Provider Knowledge and Experience in Care, Management, and Education of Pediatric Ehlers-Danlos Syndrome

Overview

Journal Glob Pediatr Health

Specialty Pediatrics

Date 2022 Jul 25

PMID 35873707

Authors

Jordan T Jones

William R Black

Affiliations

Soon will be listed here.

Citing Articles

The Relationship Between Fatigue, Pain Interference, Pain-Related Distress, and Avoidance in Pediatric Hypermobile Ehlers-Danlos Syndrome.

Sokol O, Biggs E, Berger A, Simons L, Bhandari R Children (Basel). 2025; 12(2).

PMID: 40003271 PMC: 11854175. DOI: 10.3390/children12020170.

Patient and parent knowledge, understanding, and concerns after a new diagnosis of Ehlers Danlos syndrome.

Jones J, Black L, Black W Orphanet J Rare Dis. 2024; 19(1):493.

PMID: 39736684 PMC: 11684232. DOI: 10.1186/s13023-024-03517-y.

Cardiovascular, autonomic symptoms and quality of life in children with hypermobile Ehlers-Danlos syndrome.

Hertel A, Black W, Lytch A, Cramer E, Malloy Walton L, Jones J SAGE Open Med. 2024; 12:20503121241287073.

PMID: 39420997 PMC: 11483680. DOI: 10.1177/20503121241287073.

The need for primary care providers in the clinical management of hypermobility spectrum disorders and ehlers-danlos syndrome: a call to action.

Black W, Black L, Goldstein-Leever A, Fox L, Pratt L, Jones J Rheumatol Int. 2024; 44(11):2273-2278.

PMID: 39110211 DOI: 10.1007/s00296-024-05676-4.

Patient and Parent Knowledge, Understanding, and Concerns After a New Diagnosis of Ehlers Danlos Syndrome.

Jones J, Black L, Black W Res Sq. 2024; .

PMID: 38946955 PMC: 11213229. DOI: 10.21203/rs.3.rs-4433259/v1.

References

Joseph A, Joseph S, Francomano C, Kontis T . Characteristics, Diagnosis, and Management of Ehlers-Danlos Syndromes: A Review. JAMA Facial Plast Surg. 2017; 20(1):70-75. DOI: 10.1001/jamafacial.2017.0793. View

Berglund B, Anne-Cathrine M, Randers I . Dignity not fully upheld when seeking health care: experiences expressed by individuals suffering from Ehlers-Danlos syndrome. Disabil Rehabil. 2009; 32(1):1-7. DOI: 10.3109/09638280903178407. View

Bloom L, Byers P, Francomano C, Tinkle B, Malfait F . The international consortium on the Ehlers-Danlos syndromes. Am J Med Genet C Semin Med Genet. 2017; 175(1):5-7. DOI: 10.1002/ajmg.c.31547. View

Fikree A, Chelimsky G, Collins H, Kovacic K, Aziz Q . Gastrointestinal involvement in the Ehlers-Danlos syndromes. Am J Med Genet C Semin Med Genet. 2017; 175(1):181-187. DOI: 10.1002/ajmg.c.31546. View

Engelbert R, Juul-Kristensen B, Pacey V, De Wandele I, Smeenk S, Woinarosky N . The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome. Am J Med Genet C Semin Med Genet. 2017; 175(1):158-167. DOI: 10.1002/ajmg.c.31545. View

Bowen J, Sobey G, Burrows N, Colombi M, Lavallee M, Malfait F . Ehlers-Danlos syndrome, classical type. Am J Med Genet C Semin Med Genet. 2017; 175(1):27-39. DOI: 10.1002/ajmg.c.31548. View

Martin V, Neilson D . Joint hypermobility and headache: the glue that binds the two together--part 2. Headache. 2014; 54(8):1403-11. DOI: 10.1111/head.12417. View

Ishiguro H, Yagasaki H, Horiuchi Y . Ehlers-Danlos Syndrome in the Field of Psychiatry: A Review. Front Psychiatry. 2022; 12:803898. PMC: 8787077. DOI: 10.3389/fpsyt.2021.803898. View

Hakim A, OCallaghan C, De Wandele I, Stiles L, Pocinki A, Rowe P . Cardiovascular autonomic dysfunction in Ehlers-Danlos syndrome-Hypermobile type. Am J Med Genet C Semin Med Genet. 2017; 175(1):168-174. DOI: 10.1002/ajmg.c.31543. View

10.

Henderson Sr F, Austin C, Benzel E, Bolognese P, Ellenbogen R, Francomano C . Neurological and spinal manifestations of the Ehlers-Danlos syndromes. Am J Med Genet C Semin Med Genet. 2017; 175(1):195-211. DOI: 10.1002/ajmg.c.31549. View

11.

Hakim A, Cherkas L, Grahame R, Spector T, MacGregor A . The genetic epidemiology of joint hypermobility: a population study of female twins. Arthritis Rheum. 2004; 50(8):2640-4. DOI: 10.1002/art.20376. View

12.

Castori M, Tinkle B, Levy H, Grahame R, Malfait F, Hakim A . A framework for the classification of joint hypermobility and related conditions. Am J Med Genet C Semin Med Genet. 2017; 175(1):148-157. DOI: 10.1002/ajmg.c.31539. View

13.

Walton H, Simpson A, Ramsay A, Hunter A, Jones J, Ng P . Development of models of care coordination for rare conditions: a qualitative study. Orphanet J Rare Dis. 2022; 17(1):49. PMC: 8843018. DOI: 10.1186/s13023-022-02190-3. View

14.

Rombaut L, De Paepe A, Malfait F, Cools A, Calders P . Joint position sense and vibratory perception sense in patients with Ehlers-Danlos syndrome type III (hypermobility type). Clin Rheumatol. 2009; 29(3):289-95. DOI: 10.1007/s10067-009-1320-y. View

15.

Tinkle B, Castori M, Berglund B, Cohen H, Grahame R, Kazkaz 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 C Semin Med Genet. 2017; 175(1):48-69. DOI: 10.1002/ajmg.c.31538. View

16.

Hakim A, De Wandele I, OCallaghan C, Pocinki A, Rowe P . Chronic fatigue in Ehlers-Danlos syndrome-Hypermobile type. Am J Med Genet C Semin Med Genet. 2017; 175(1):175-180. DOI: 10.1002/ajmg.c.31542. View

17.

Bathen T, Hangmann A, Hoff M, Andersen L, Rand-Hendriksen S . Multidisciplinary treatment of disability in ehlers-danlos syndrome hypermobility type/hypermobility syndrome: A pilot study using a combination of physical and cognitive-behavioral therapy on 12 women. Am J Med Genet A. 2013; 161A(12):3005-11. DOI: 10.1002/ajmg.a.36060. View

18.

Adib N, Davies K, Grahame R, Woo P, Murray K . Joint hypermobility syndrome in childhood. A not so benign multisystem disorder?. Rheumatology (Oxford). 2005; 44(6):744-50. DOI: 10.1093/rheumatology/keh557. View