• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
( EDS is not thought to be rare tho now)


Open Access

CASE REPORT http://www.scopemed.org/?mno=39517

Ann Paediatr Rheum. 2014; 3(2): -
doi:
10.5455/apr.030420141956


Ehler-Danlos Syndrome Association with Multiple Small Bowel Atresias in Infancy

Jesus A Correa, Sara C Fallon, Mary L Brandt.


A B S T R A C T


Abstract
Ehlers-Danos syndrome is a rare genetic disorder of defective collagen synthesis. The disease most commonly affects the skin and vascular system. Intestinal atresia is a rare cause of neonatal obstruction, and is thought to occur after a disruption of the blood supply to a segment of intestine. We present a patient who had multiple areas of small bowel atresia diagnosed at birth, and was later diagnosed with Ehler-Danlos syndrome. We hypothesize that the collagen vascular anomalies associated with Ehlers-Danlos syndrome could be responsible for the presentation of multiple small bowel atresias in this patient.
Key words: Ehler-Danlos Syndrome, Intestinal Atresia

A
 
Last edited by a moderator:

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Genetics of Valvular Heart Diseas


Abstract

Valvular heart disease is associated with significant morbidity and mortality and often the result of congenital malformations. However, the prevalence is increasing in adults not only because of the growing aging population, but also because of improvements in the medical and surgical care of children with congenital heart valve defects. The success of the Human Genome Project and major advances in genetic technologies, in combination with our increased understanding of heart valve development, has led to the discovery of numerous genetic contributors to heart valve disease. These have been uncovered using a variety of approaches including the examination of familial valve disease and genome-wide association studies to investigate sporadic cases. This review will discuss these findings and their implications in the treatment of valvular heart disease.

Genetics of Valvular Heart Disease

S LaHaye, J Lincoln, V Garg - Current Cardiology Reports, 2014

... LDS has a similar phenotype to Marfan syndrome and interestingly is caused by mutations in
TGF-β receptors 1 and 2 (TGFBR1 ... tissue dysplasias caused by mutations in a variety of collagen
genes are also characterized by MVP and include Ehlers-Danlos (EDS), Stickler, and ...



Current Cardiology Reports April 2014, 16:487

A
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Clinical Rheumatology April 2014
Heart rate, conduction and ultrasound abnormalities in adults with joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type
Abstract
Joint hypermobility syndrome (JHS) and Ehlers-Danlos syndrome, hypermobility type (EDS-HT) are two clinically overlapping heritable connective tissue disorders strongly associating with pain, fatigue and other secondary aspects. Though not considered a diagnostic criterion for most EDS subtypes, cardiovascular involvement is a well-known complication in EDS. A case-control study was carried out on 28 adults with JHS/EDS-HT diagnosed according to current criteria, compared to 29 healthy subjects evaluating resting electrocardiographic (ECG), 24-h ECG and resting heart ultrasound data. Results obtained in the ECG studies showed a moderate excess in duration of the PR interval and P wave, an excess of heart conduction and rate abnormalities and an increased rate of mitral and tricuspid valve insufficiency often complicating with “true” mitral valve prolapse in the ecocardiographic study. These variable ECG subclinical anomalies reported in our sample may represent the resting surrogate of such a subnormal cardiovascular response to postural changes that are known to be present in patients with JHS/EDS-HT. Our findings indicate the usefulness of a full cardiologic evaluation of adults with JHS/EDS-HT for the correct management.



Heart rate, conduction and ultrasound abnormalities in adults with joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type
F Camerota, M Castori, C Celletti, M Colotto, S Amato… - Clinical Rheumatology, 2014
Abstract Joint hypermobility syndrome (JHS) and Ehlers-Danlos syndrome, hypermobility type (EDS-HT) are two clinically overlapping heritable connective tissue disorders strongly associating with pain, fatigue and other secondary aspects.



A
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
here is the link

http://forums.phoenixrising.me/index.php?threads/dr-francomano-on-chiari-malformation.30233/

Joint hypermobility syndrome/Ehlers-Danlos syndrome hypermobility type: constructing a rehabilitative approach
C Celletti, M Castori, G Morico, F Camerota - International Journal of Clinical …, 2014
EhlersDanlos syndrome hypermobility type (EDS-HT) is a heritable connective tissue disorder mainly characterized by joint hyper mobility, chronic/recurrent pain, joint instability complications and minor skin changes [1]. Recently, a group of international experts ...

here is the link
 
Last edited:

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Autonomic symptom burden in the hypermobility type of Ehlers-Danlos syndrome: A comparative study with two other EDS types, fibromyalgia and healthy controls
D Wandele Inge, C Patrick, P Wim, R Steven… - Seminars in Arthritis and …, 2014
Aim This study provides insight into the profile and importance of autonomic symptoms in the hypermobility type (HT) of Ehlers-Danlos Syndrome (EDS). The impact of these symptoms is put into perspective by comparing with fibromyalgia (FM) and two other EDS types. ...


A
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Allyson,

Your first two links are not working.

Can you indicate how this is related to EDS?

Sushi
EDS is known cause of Aneurysms and in mentioned n text

will chase up the link if it is working - thanks for letting me know\

those links were just to authors and have been removed now


Ally
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
EDS was in e clip I got - it is hard to post the clip and the link - did you read the full text? I have not been e to access full text yet

just sent this Australian ABC Radio National clip - thanks Leanne - who notes the EDS facial features on the trapeze artist with " chronic fatigue" - soft stretchy skin, heart shped face large eyes, attached earlobes etc


http://www.abc.net.au/radionational/programs/lifematters/the-chronic-fatigue-of-circus-life/5478904?WT.mc_id=Innovation_Radio-RadioNational-LifeMatters|SpenserInwoodTheChronicFatigueOfCircusLife_FBP|abc



A