EDS Research and Awareness Literature

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					       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                           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
 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.

                                                  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.
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.

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Description: It is time that Ehlers-Danlos Syndrome becomes known world-wide. Print a couple pamphlets and help spread the word.