EDS Awareness by NadiaBodkin

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									   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               livingwitheds@hotmail.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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