Ehlers-Danlos Links - be sure to check out the recent publications on EDS with the link highlighted in BOLD. Lots of good information on treatments, concerns, complications etc.
TO ACCESS POWERPOINT PRESENTATIONS, PDF FILES OR BOOKS CLICK HERE
Review of the imaging findings in a cohort of patients with a diagnosis of vascular EDS. The radiologic, surgical, and genetic databases at a single multispecialty medical practice were reviewed for a 35-year period between 1971 and 2006. Thirty-three patients with a clinical diagnosis of vascular EDS were identified. Imaging studies were available for 28 patients, 13 men and 15 women, with a mean age of 39.8 ± 16 years at the time of diagnosis. A vascular radiologist reviewed a total of 189 imaging examinations: 87 CT, 27 MRI, 59 sonography, and 16 angiography.Support Groups
Ehlers Danlos National Foundation
Overview: Signs & Symptoms
Gene Review from Univ. of Washington
Coping with Ehlers Danlos Syndrome
Pubmed - very good overview with findings and pictures
Recessive form of Ehlers Danlos Tenascin-X Deficiency
Q & A about heritable disorders of the connective tissues
Signs & Symptoms of an Aneurysm
Patient/Parent Help Forms or Printouts for Eyes - Surgery - Oral Manifestations - Diagnose Problems - Parent/Educator Guide & Recent EDS Publications
Parent & Educator Guide a pdf file
Dr. Driscoll Eye Doctor Handout for patients
Surgical Checklist - SCOAP is a program of the Foundation for Healthcare Quality
Oral Manifestations of Ehlers Danlos
Medications or Treatments Currently Used or Researched
Doxycycline - research finds may prevent abdominal aortic aneurysm
Celiprolol In Patients in Ehlers Danlos Study
Desmospressin responsiveness in in children with EDS associated bleeding disorder
Alternative Medicine Treatments Options
Use of Anti-Inflammatory Medications in managing Atypical Gingivitis associated with HEDS
Adenoviral Gene Transfer restores Lysyl Hydroxylase
NIAMS Scientists Find Potential New Way to Block Inflammation in Autoimmune Disease
ORBSCAN MAPPING in Ehlers Danlos Syndrome - pdf file
Medical Precautions Currently Used or Researched for Patient Care
SKIN BIOPSY VS. BLOOD Ehlers-Danlos syndrome type IV: unusual congenital anomalies in a mother and son with a COL3A1 mutation and a normal collagen III protein profile.
Vascular & Endovascular Surgery concern
External Abdominal Wall Herniorrhaphy - Technical Considerations
Chiropractic Management of EDS Patients
Primer on EDS for the Massage Therapist
For the Practicing Dentist - The Oral Systemic Disease Connection
Management of Intractable Surgical Bleeding for VEDS - Anesthesia
Tissue Bank, Research Studies & Coalitions
NIA Study with Dr. Nazli McDonnell in Baltimore, M.D. - Patient Form
Coalition for Heritable Disorders of the Connective Tissue
NDRI - Provides Human Tissues, Cells and Organs to Scientific Researchers
Disability Help
Types of Disability Benefits- Good Info.
Social Security Administration - Benefits for Children with Disabilities
Social Security Compassionate Allowance - For Serious & Rare Disorders List of Disorders below.
Compassionate Allowance List is always being updated......
Ehlers-Danlos Type 4 or IV Inheritance and age on onset states: neonatal/infancy
Other Concerns:
Periventricular Heterotopia - New Insight
Presentation of Ehlers-Danlos Type IV with Malignant Hypertension and Renal Artery Aneurysms
Migraines during pregnancy linked to vascular disease
