Along with MDs recommendations, as well as a PT with experience with this disease. I believe the book has helped me to prevent injuring myself during exercise. So, highly recommended for Hypermobile EDS patients, as well as their families. April 16, - Published on Amazon. This is an awesome informative educational book full of helpful management tips for both patient and therapist. It was the first complete medical explanation and validation of my hyper-mobility syndrome. After years of no help from physicians who know little about this syndrome, to orthopedic doctors pretty much telling me there is nothing wrong since symptoms don't match up to common diseases and conditions, this book gave me a sense of relief because even though I knew I wasn't crazy, I could now explain to my doctors exactly what was wrong with me when previously I felt as though they thought it was all in my head.
September 9, - Published on Amazon. Concise excellent book on the latest research on EDS and in particular hypermobility.
Browse by UCL people
I used the information to talk to my doctors about a comprehensive plan to help me function better as I get older. I am athletic and have the hypermobility type only. You need to get the other book with the exercises w the muldowney protocol. January 6, - Published on Amazon. If you live in anything less than a large metropolitan area you will need backup to educate your medical and therapy team about the "impossible" sypmtoms and pain of Hypermobility Syndrome or Ehlers Danlos Syndrome type III.
Refer your family practioner or primary physician, specialists, physical therapists, massage therapist, your family members and your children's teachers [genetic issues]and curious friends to this book. It is the clearest explantion in one place, with an index, of all the myriad issues that folks with our "condition" deal with every minute of every day.
Buy your own copy and share it, or buy a separate one for your doctor. Each chapter closes with citations from peer-reviewed medical and therapy journals, an important element to gain respect with folks [including unfortunately physicians and medical specialists] who cannot believe that perfectly fine looking people have major, complicated physical issues.
I have referred people to EDS and Hypermobility websites, but this book is more complete and somehow more accessible. August 19, - Published on Amazon. Definitely a book more appropriate for medical professionals as opposed to those with no medical experience. Very good info - as an occupational therapist, I was able to understand and use all of this information. I appreciate all the work and research that went into this. Go to Amazon. Discover the best of shopping and entertainment with Amazon Prime. Prime members enjoy FREE Delivery on millions of eligible domestic and international items, in addition to exclusive access to movies, TV shows, and more.
Back to top. Edwards is a genetic disorder. It is the second most common trisomy after Down's Syndrome.
It is caused by the presence of three - instead of two - chromosomes 18 in a fetus or baby's cells. The additional chromosome usually occurs before conception, when egg and sperm cells are made.
Benign joint hypermobility syndrome Neki NS, Chhabra A - J Mahatma Gandhi Inst Med Sci
A healthy egg or sperm cell contains 23 individual chromosomes - one to contribute to each of the 23 pairs of chromosomes needed to form a normal cell with 46 chromosomes. Numerical errors arise at either of the two meiotic divisions and cause the failure of segregation of a chromosome into the daughter cells non-disjunction. This results in an extra chromosome making the haploid number 24 rather than Fertilization of these eggs or sperm that contain an extra chromosome results in trisomy, or three copies of a chromosome rather than two.
It is this extra genetic information that causes all the abnormalities characteristic of individuals with Edwards Syndrome.
Physical therapy for hypermobility
As each and every cell in their body contains extra information, the ability to grow and develop appropriately is delayed or impaired. This results in characteristic physical abnormalities such as low birth weight; a small, abnormally shaped head; small jaw; small mouth; low-set ears; and clenched fists with overlapping fingers. Babies with Edwards syndrome also have heart defects, and other organ malformations such that most systems of the body are affected. Edwards Syndrome also results in significant developmental delays.
For this reason a full-term Edwards syndrome baby may well exhibit the breathing and feeding difficulties of a premature baby. Given the assistance offered to premature babies, some of these infants are able to overcome these initial difficulties, but eventually succumb. The survival rate for Edwards Syndrome is very low. About half die in utero.
- Reveries on the Art of War.
- Register for a free account.
- Library Catalogue.
- Ms Susan Maillard.
- Baroque Churches.
Major causes of death include apnea and heart abnormalities. It is impossible to predict the exact prognosis of an Edwards Syndrome child during pregnancy or the neonatal period. As major medical interventions are routinely withheld from these children, it is also difficult to determine what the survival rate or prognosis would be for the condition if they were treated with the same aggressiveness as their genetically normal peers. They are typically severely to profoundly developmentally delayed. Although there is an increased risk of conceiving a child with Edwards Syndrome as a woman's age increases, women in their 20's and 30's still conceive Edwards Syndrome babies.
A small percentage of cases occur when only some of the body's cells have an extra copy of chromosome 18, resulting in a mixed population of cells with a differing number of chromosomes. Such cases are sometimes called mosaic Edwards syndrome.
Very rarely, a piece of chromosome 18 becomes attached to another chromosome translocated before or after conception. Affected people have two copies of chromosome 18, plus extra material from chromosome 18 attached to another chromosome.
With a translocation, the person has a partial trisomy for chromosome 18 and the abnormalities are often less than for the typical Edwards syndrome. Read more at Wikipedia.
More information on EDS
Classification of musculoskeletal disorders has received particular attention in physical therapist practice and research. The target audience for this book includes physical therapists who examine and manage patients with musculoskeletal disorders. This text describes joint hypermobility as a ligamentous laxity that may be inherited or acquired.
The hypermobility classification is outlined in detail as are its clinical features and incidence and the prognosis for patients with the condition. The text comprises 11 chapters, written by several authors. The first 3 chapters were written by Rodney Grahame. Chapter 1 describes the recognition of hypermobility. In this chapter, the 9-point Heighten hypermobility score is introduced as a means of determining the presence of the condition. Although this scale and variations of the measure are referenced by several of the contributing authors, the reliability and validity of these measurements are not mentioned in the text.
This chapter also distinguishes joint hypermobility syndrome JHS from joint hypermobility by the presence of symptoms that are brought on by sustained movements and postures. The clinical features of JHS help to further describe the condition. The discussions of the physiological and psychological abnormalities that accompany JHS help to explain why so many patients report symptoms related to organs that are seemingly remote from the musculoskeletal system.