EHLER’S DANLOS SYNDROME EDS may be overlooked because of the lack of understanding by (EDS) physicians. It is rarely mentioned in current medical curriculum and physicians don’t look for it when This pamphlet opens to the left (rather differentiating symptoms from other than the usual opening to the right). This is connective tissue related diseases. to symbolize that "difference" doesn't This could be because EDS does not have a known treatment or cure necessarily mean "useless" or of a "lower- leading physicians to believe if one quality." Just like this pamphlet, people can’t fix it, don’t look for it. Yet, the born with EDS are made different. From reality is that so much of the IT IS IMPORTANT TO UNDERSTAND THAT destruction to a person’s body could first physical glance, the difference is NOT ALL INDIVIDUALS WITH REAL be avoided/prevented with an early impossible to recognize or even to notice. ILLNESSES DISPLAY VISIBLE SYMPTOMS. diagnosis. But if time is taken out to open this SOME SYMPTOMS INCLUDE: pamphlet (or to investigate the patient's “…because we are not believed, too FIBROMYALGIA often a diagnosis comes after we are symptoms), the difference from the norm HYPEREXTENDABLE JOINTS told that we are emotionally unstable becomes obvious. If given the chance to and should seek psychiatric care.” investigate this difference, one will come EASY BRUISING Quote extracted from EDNF Presentation to Congress to find that although this pamphlet like ABNORMAL WOUND HEALING & SCAR EDSers (a person born with EDS) is made FORMATION Commonly Used Terms: different from the norm, useful EDS – Ehlers Danlos Syndrome LOW MUSCLE TONE & MUSCLE information is still effectively EDSer – individual born with EDS communicated to those suffering from this WEAKNESS Zebra Allies – individuals not afflicted chronic condition, for those with loved BALANCE AND GAIT PROBLEMS with EDS themselves but support the one’s suffering from EDS, and for those cause for various reasons who have never heard of this disorder. EDSers (like this pamphlet) have the . potential to be among the most useful, Presented to you by Nadia Bodkin Living with EDS can be quite productive people of today's society. But email@example.com challenging. Although at first glance we need your help in spreading the word. an individual with EDS looks perfectly We need more research being done for www.EDSers.com normal, internally they must deal with effective treatment leading to an eventual chronic pain due to joint, muscle, and cure. P.O. Box 145 organ instability. Individuals with EDS Northvale, NJ 07647 have a high prevalence of additional complications including organ failure, It is time that EDS becomes known world- migraines, and joint dislocations. This wide. Let us spread the word. 201-702-4075 makes everyday day tasks difficult and www.youtube.com/livingwitheds.com painful to perform. EHLER-DANLOS www.EDSers.com SYNDROME What is Ehlers-Danlos Syndrome? The zebra Ehlers-Danlos Syndrome is a connective The ways in which EDS can affect the body have is the tissue disorder. People who suffer from EDS to do with the fact that there is something official mascot for have skin that is weak and stretchy and are wrong with the way the body makes collagen, a EDS. unusually flexible. When a person with EDS major component of our connective tissues. becomes injured, their body has difficulty Anything having to do with an EDSers skin, such repairing itself. as closing a wound or having a baby, is made more difficult when the skin is more elastic than normal. The yellow The cause of EDS is heredity. It is caused by and blue a number of different genetic mutations that In general, Vascular EDS is the only potentially ribbon, represent EDS affect collagen, a protein that is involved the life-threatening type, as the blood vessels are awareness. formation and structure of connective the most affected by the damaged collagen. In tissues. Most of the mutations that cause this case, there is a higher risk of vascular EDS are autosomal dominant traits, meaning complications, such as holes forming in blood that if a person has EDS, there is a 50 vessels or in the intestines. percent chance that he/she will pass it on to In general, EDS affects ~ 1 in 5,000 people. It is his/her children. The Hypermobility Type of EDS is one of the considered a rare disease largely in part to the lack more common types of EDS and the most of awareness. Research on EDS would not only prominent symptom is loose, unstable joints. benefit EDS patients, but would also benefit There are six main types of EDS - some are Symptoms include stretchy or velvety skin and common and some are very rare - they all joint dislocations. They may also experience understanding of other connective tissue related have different prominent symptoms. In more long-term or chronic pain in their joints as diseases. And, at the biomolecular level, a better general, EDS symptoms include loose joints, well as the rest of their body. You may visit understanding of arthritis and its treatment, of skin that is easily broken, scarring, muscle www.EDSers.com for more information. premature membrane rupture and premature tiredness, problems with the heart valves, and bruising. Now that you have been introduced to EDS, births, as well as wound healing in the elderly. please spread the word. Thank you.
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