Upcoming Book: Since Ehlers-Danlos syndrome (EDS) is a rare, hereditary, connective-tissue disorder. It is known that EDS is not well documented in Literature, so I have decided to write a book about EDS: The book will include medical research, case studies, symptoms, other than the small paragraph that Doctors get in there medical texts. Far more goes on with our bodies than most of these doctors understand or fathom. This book will be dedicated to all who are suffering from EDS. It is time to stand up and let the world or should I say the medical doctors know what is going on with our bodies with this hidden disorder EDS. It is my hope to get this book into the hands of doctors to be used as a tool to help them better understand patients with EDS and their complications. If you are interested in participating by sharing your stories,trials,testimonies, symptoms, and your experiences with doctors, I have listed categories below. Many of you from the support groups have already responded with interest. Thank YOU! I suffer and can relate to some of the symptoms below and are willing to share them with others. Please let me know. I will be working on this starting now not sure how long it will take just depends on the responses and information shared. Open to all who suffer form EDS Americans/International. Names will be mentioned with their State/ Country following each story/testimony Unless You Request NO Mention. These stories/testimonies can be about you, your children, family members or friends. Testimonies can consist of problems you had with the medical field, malpractice, diagnosis, a surgery, deaths, etc, These are the Some of the Major Subject Heading(s) Minor Subject Heading(s) I am seeking Information: (See Below ) What a better way to learn about our Suffering -- Sharing with each other. Acrogeria Anal Prolapse (in children) Anesthetic Aortic Dilatation Arterial Rupture Arteriovenous, carotid-cavernous sinus fistula Arthritis/Joint Noises/ Joints Locking Balance (physical) Blood Body Temperature and Pressure Bowel Perforation Braces and Splints Cardiac/Cardiovascular Cervical Insufficiency Characteristic Facial Appearance Chiropractic Chronic Joint and Limb Pain Chronic Arthralgia & Myalgia Clotting Abnormalities Complications Complications of Joint Hypermobility (sprains,etc.) Congenital Bilateral Hip Dislocation Constipation (children & adults) Delayed Gross Motor Skills Diet Digestive Trouble Disability Dislocations/Sublexations Diverticulum Bladder Doctor Comments/Knowledge Doctor Referral(s) by State/Country Diagnostics Diagnosis Stories Ehlers-Danlos Syndrome [diagnosis] Endurance/Sleep Dyspareunia Exercise Extensive Bruising Eyes Family History Fatigue Fibromyalgia Finding the EDS Group Fistulas Gastric Reflux Gastrointestinal Gastrointestinal Hepatol Genetics Geriatric Effects Gingival Recession Hematomas Herbal Remedies (used that have helped) Hernias (Hiatal, Large Hernias, (umbilical, inguinal) Hip Dysplaysia (congenital or not) Hypermobility of Small Joints Insomnia Intestinal Perforation Intrapartum Uterine Rupture Joint Hypermobility Joint Instability [physiopathology] Joint Swelling Loss of motor skills Medications Mitral Valve Prolapse (MVP) Molluscoid Pseudotumors Muscle Hypotonia Musculoskelatal Pain Myopia Nerve Pinching, Pricklies and Problems Occupital Horn Syndrome (also called EDS) Ocular OT Suggestions Orthopedic problems Pain associated with EDS Pancreatitus (acute) Patient Satisfaction Periodontal Physical Therapy Plastic Surgery (for scaring) Pneumothorax / Pneumohemothorax (surgery) Podiatry Poor Soft Tissue Healing Post-Operative Hernias Pregnancy & Birth: (Uterine Ruptures, Intrapartum uterine rupture and pre-and post partum arterial bleeding, Premature rupture of (fetal) membranes, cervical incompetence, premature delivery, c-section, no complications) Proximal Aortic Dilatation Prolapse (and Infections) Psychological: Coping Problems & Strategies; (How do you perceive your daily life, fears, pain, experiences of non-affirmation in daily living and social life) Pulmonary System Radiologically Mild Osteopenia Range of Motion Reflexology Renal Detachment Scars (dystrophic, thin, atrophic papyraceous, wide discolred) Scoliosis (Kyphoscoliosis) Sex Sexual Dysfunction Sigmoid Colon- Bowel Rupture Sinus Fistula Skin Biopsy Skin (hyperlasticity, soft, doughy, transparent, sagging, redundant skin) Smooth Velvety Skin Social Security Disability/Supplemental Security Income (SSI) Spine (Curvature) Spheroids Subcutaneous Spheroids Sudden Family Death in close relative(s) Support Groups List Surgery(s) Swimming Talipes equinovarus (Club Foot Teeth Tendon and Muscle Rupture Thin Translucent Skin Thoracotomy (adverse effects) Uterine Perforation/Rupture Varicose Veins Vesical Diverticula Visceral Rupture Voice Wheelchair Wound Healing X-link cutis laxa (also known as EDS) Additional Type III Information Initial Miscellaneous Observations *Ehlers-Danlos Syndrome [surgery] *Joint Instability [surgery] EDS In: Infants Adolescence Adults Middle Age *Articular Treatment *Outcome Employment *Pain Measurement *Personnel View of Health *Physical Therapy *Prognosis *Support Groups *How the Support for individuals with EDS requires self concept, attitude of health, personal *Quality of Life *False Accusations of Child Abuse due to your children having EDS |
Upcoming Book: Since Ehlers-Danlos syndrome (EDS) is a rare, hereditary, connective-tissue disorder. It is known that EDS is not well documented in Literature, so I have decided to write a book about EDS: The book will include medical research, case studies, symptoms, other than the small paragraph that Doctors get in there medical texts. Far more goes on with our bodies than most of these doctors understand or fathom. This book will be dedicated to all who are suffering from EDS. It is time to stand up and let the world or should I say the medical doctors know what is going on with our bodies with this hidden disorder EDS. It is my hope to get this book into the hands of doctors to be used as a tool to help them better understand patients with EDS and their complications. If you are interested in participating by sharing your stories,trials,testimonies, symptoms, and your experiences with doctors, I have listed categories below. Many of you from the support groups have already responded with interest. Thank YOU! I suffer and can relate to some of the symptoms below and are willing to share them with others. Please let me know. I will be working on this starting now not sure how long it will take just depends on the responses and information shared. Open to all who suffer form EDS Americans/International. Names will be mentioned with their State/ Country following each story/testimony Unless You Request NO Mention. These stories/testimonies can be about you, your children, family members or friends. Testimonies can consist of problems you had with the medical field, malpractice, diagnosis, a surgery, deaths, etc, These are the Some of the Major Subject Heading(s) Minor Subject Heading(s) I am seeking Information: (See Below ) What a better way to learn about our Suffering -- Sharing with each other. Acrogeria Anal Prolapse (in children) Anesthetic Aortic Dilatation Arterial Rupture Arteriovenous, carotid-cavernous sinus fistula Arthritis/Joint Noises/ Joints Locking Balance (physical) Blood Body Temperature and Pressure Bowel Perforation Braces and Splints Cardiac/Cardiovascular Cervical Insufficiency Characteristic Facial Appearance Chiropractic Chronic Joint and Limb Pain Chronic Arthralgia & Myalgia Clotting Abnormalities Complications Complications of Joint Hypermobility (sprains,etc.) Congenital Bilateral Hip Dislocation Constipation (children & adults) Delayed Gross Motor Skills Diet Digestive Trouble Disability Dislocations/Sublexations Diverticulum Bladder Doctor Comments/Knowledge Doctor Referral(s) by State/Country Diagnostics Diagnosis Stories Ehlers-Danlos Syndrome [diagnosis] Endurance/Sleep Dyspareunia Exercise Extensive Bruising Eyes Family History Fatigue Fibromyalgia Finding the EDS Group Fistulas Gastric Reflux Gastrointestinal Gastrointestinal Hepatol Genetics Geriatric Effects Gingival Recession Hematomas Herbal Remedies (used that have helped) Hernias (Hiatal, Large Hernias, (umbilical, inguinal) Hip Dysplaysia (congenital or not) Hypermobility of Small Joints Insomnia Intestinal Perforation Intrapartum Uterine Rupture Joint Hypermobility Joint Instability [physiopathology] Joint Swelling Loss of motor skills Medications Mitral Valve Prolapse (MVP) Molluscoid Pseudotumors Muscle Hypotonia Musculoskelatal Pain Myopia Nerve Pinching, Pricklies and Problems Occupital Horn Syndrome (also called EDS) Ocular OT Suggestions Orthopedic problems Pain associated with EDS Pancreatitus (acute) Patient Satisfaction Periodontal Physical Therapy Plastic Surgery (for scaring) Pneumothorax / Pneumohemothorax (surgery) Podiatry Poor Soft Tissue Healing Post-Operative Hernias Pregnancy & Birth: (Uterine Ruptures, Intrapartum uterine rupture and pre-and post partum arterial bleeding, Premature rupture of (fetal) membranes, cervical incompetence, premature delivery, c-section, no complications) Proximal Aortic Dilatation Prolapse (and Infections) Psychological: Coping Problems & Strategies; (How do you perceive your daily life, fears, pain, experiences of non-affirmation in daily living and social life) Pulmonary System Radiologically Mild Osteopenia Range of Motion Reflexology Renal Detachment Scars (dystrophic, thin, atrophic papyraceous, wide discolred) Scoliosis (Kyphoscoliosis) Sex Sexual Dysfunction Sigmoid Colon- Bowel Rupture Sinus Fistula Skin Biopsy Skin (hyperlasticity, soft, doughy, transparent, sagging, redundant skin) Smooth Velvety Skin Social Security Disability/Supplemental Security Income (SSI) Spine (Curvature) Spheroids Subcutaneous Spheroids Sudden Family Death in close relative(s) Support Groups List Surgery(s) Swimming Talipes equinovarus (Club Foot Teeth Tendon and Muscle Rupture Thin Translucent Skin Thoracotomy (adverse effects) Uterine Perforation/Rupture Varicose Veins Vesical Diverticula Visceral Rupture Voice Wheelchair Wound Healing X-link cutis laxa (also known as EDS) Additional Type III Information Initial Miscellaneous Observations *Ehlers-Danlos Syndrome [surgery] *Joint Instability [surgery] EDS In: Infants Adolescence Adults Middle Age *Articular Treatment *Outcome Employment *Pain Measurement *Personnel View of Health *Physical Therapy *Prognosis *Support Groups *How the Support for individuals with EDS requires self concept, attitude of health, personal *Quality of Life *False Accusations of Child Abuse due to your children having EDS |
EDNF |
