EHLER’S DANLOS “Too often a diagnosis is only made SYNDROME after 3 or 4 generations of premature death or after a person is braced in different parts of their body just to hold themselves together. Too often In today’s society, many of us a diagnosis is made only after one are inclined to make decisions has spent years going from one based on what we see. An doctor to another (in my case 30 individual with an illness or years) seeking help and answers. condition is sometimes Too often a diagnosis is made only after one has had unneeded confirmed to be sick because of surgeries or repeated surgeries and the physical symptoms they IT IS IMPORTANT TO UNDERSTAND THAT treatments that cause irreparable present. What about illnesses NOT ALL INDIVIDUALS WITH REAL damage or death to people with EDS. that do not present with any ILLNESSES DISPLAY VISIBLE Because of one's skin involvement, physical symptoms, measurable SYMPTOMS. SOME SYMPTOMS INCLUDE: too often a diagnosis is made only by the naked eye? Are those after one has been accused of self- FIBROMYALGIA mutilation or one's family accused of individuals less deserving of appropriate medical attention, HYPEREXTENDABLE JOINTS child or spousal abuse. And because we are not believed, too often a or in less pain because they EASY BRUISING diagnosis comes after we are told don’t follow the typical that we are emotionally unstable and ABNORMAL WOUND HEALING & algorithms that we have all should seek psychiatric care. These become accustomed to following? SCAR FORMATION situations are incredulous to me and One of the conditions I want to LOW MUSCLE TONE & MUSCLE I hope that they are to you, but they bring your attention to is are an all too common reality for all WEAKNESS of us with EDS. Every person with Ehlers-Danlos Syndrome. EDS has a horror story.” EDNF BALANCE AND GAIT PROBLEMS Presentation to Congress EDS may be overlooked because of the lack of understanding by physicians. It is Presented to you by Nadia Bodkin Living with EDS can be quite rarely mentioned in current medical email@example.com challenging. Although at first glance. curriculum and physicians don't look for it when differentiating symptoms from an individual with EDS looks perfectly other connective tissue related diseases. normal, internally they must deal with This could be because EDS does not have EDS Awareness chronic pain due to joint and muscle Delete text and place photo here. instability. Individuals with EDS have a a known treatment or cure leading physicians to believe if one can't fix it, high prevalence of additional www.EDSers.com don't look for it. Yet the reality is that so complications including organ failure, much of the destruction to a person's migraines, and joint dislocations. This body could be avoided/prevented with an makes everyday day tasks difficult and early diagnosis. painful to perform. EHLER-DANLOS SYNDROME www.EDSers.com What is Ehler-Danlos Syndrome? The zebra The ways in which Ehlers-Danlos Syndrome Ehlers-Danlos Syndrome is a connective is the (EDS) can affect the body have to do with tissue disorder. People who suffer from official the fact that there is something wrong with EDS have skin that is weak and stretchy and mascot for the collagen, a major part of your connective are unusually flexible. When a person with EDS. tissues. Anything having to do with opening Ehlers-Danlos syndrome becomes injured, their body has difficulty repairing itself. the person’s skin, such as closing a wound or The cause of Ehlers-Danlos Syndrome (EDS) having a baby, is made more difficult when is heredity. It is caused by a number of the skin is more elastic than normal. The yellow different genetic mutations that affect and blue collagen, a protein that is involved in the In general, Vascular EDS is the only ribbon, stretchiness of skin and other connective potentially life-threatening type, as the blood represent EDS tissues. Most of the mutations that cause vessels are the most affected by the damaged awareness. EDS are autosomal dominant traits, meaning collagen. In this case, there is a higher risk of that if a person has EDS, there is a 50 percent vascular complications, such as holes chance that he/she will pass it on to his/her forming in blood vessels or in the intestines. children. In general, EDS affects ~ 1 in 5,000 people. It The Hypermobility Type of EDS is one of the more common types of EDS and the most is considered a rare disease largely in part to There are six main types of EDS - some are prominent symptom is loose joints. the lack of awareness. Research on EDS common and some are very rare - they all Symptoms include stretchy or velvety skin would not only benefit EDS patients, but would have different prominent symptoms. In and joint dislocations. They may also also benefit understanding of other connective general, EDS symptoms include loose joints, experience more long-term or chronic pain in skin that is easily broken, scarring, muscle their joints as a result of how loose they are. tissue related diseases. And, at the tiredness, problems with the heart valves, and biomolecular level, a better understanding of bruising. arthritis and its treatment, of premature Now that you have been introduced to membrane rupture and premature births, as EDS, please spread the word. Thank you. well as wound healing in the elderly.