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Myths & Facts

As with many disorders that have received little research, there are usually numerous false assumptions that arise. These are some that have been made about Ehlers-Danlos Syndrome (EDS). They false assumptions stem from a lack of understanding, education, and knowledge about this disorder. This section was created in hopes of clarifying some of these false assumptions.

Myth:"You don't have stretchy skin,so you can't have EDS."
Fact: Loose stretchy skin is "not" a distinguishing characteristic among all the types of Ehlers-Danlos Syndrome (EDS). There are several types of EDS, some with stretchy skin, others without. The presence or absence of skin hyperextensibility (stretchy skin) is probably a reflection of the underlying collagen (or connective tissue) that is altered or disrupted. For some forms of EDS, the gene and protein that are responsible for the disorder have been identified (for example, EDS type IV). For others (Hypermobility type), the underlying cause is unknown. The skin manifestations (stretchy and/or smooth, velvety) can range from mild to severe. The clinical diagnosis should be based on individualized characteristics.

Myth: "Ehlers-Danlos is an auto-immune disease."
Fact: No. An "auto-immune" disease is one that is defined as a disorder that results from disregulation of the immune system. The presence of an autoimmune response is signaled by the appearance of auto-antibody in the circulation. Since autoimmunity can affect any organ in the body (including brain, skin, kidney, lungs, liver, heart, and thyroid), the clinical expression of the disease depends upon the site affected. Virtually all autoimmune diseases are dependent upon the production of an abnormal population of T cells, one of the circulating white blood cells. Ehlers-Danlos syndrome is not considered an autoimmune disease.

Myth: "Only certain ethnic groups are predisposed to Ehlers-Danlos Syndrome."
Fact:: There is no known ethnic, racial, geographic or other population divide that appears to predispose to EDS or to different forms of EDS. All are vulnerable to being born with this disorder.

Myth: "Pain "is not" associated with EDS."
Fact:: Yes, it most definitely is. Pain is a common manifestation of EDS. It can range from mild to severe, and can become chronic. Frequently it is difficult to establish the precise anatomical localization of the pain. Individuals with Ehlers-Danlos Syndrome may experience pain - to greater or lesser degree. Joint pain is most commonly reported in the hypermobility EDS, in the classical EDS and others. As EDS is a disorder resulting from alterations or defects in connective tissue, it is possible that the weakness in connective tissue may cause chronic problems in joints, tendons, ligaments, bones, skin and other tissues that hold the body together, contributing to pain. The degree of pain and the location is not as predictable as one would expect, highlighting the need for an individualized evaluation and treatment for each patient.

Myth: "This pain your feeling... is all in your head."
Fact:: This comes directly from the experiences of many who suffer with EDS. Some of their physicians have practiced contempt and disregard, when it comes the their pain. There seems to be a pre-conceived cultural biases among some, especially when it comes to women in pain. Many have gone years without being properly diagnosed with EDS. With no significant major medical trauma, evident other than their hypermobility - Some physicians contribute their pain, to hormones, stress, or that it has to be in their heads. Often, their pain is dismissed and they are often labeled hysterical, malingerers, and/or drug seekers. Many have received referrals for psychiatric treatment. Those with EDS have legitimate pain.... It is not in their heads and it^s real. "Individuals with EDS experience frequent and severe pain throughout much of their lives. EDS should be considered in the differential diagnosis of chronic musculoskeletal pain."

Myth: "You don't "look" like you have EDS."
Fact:: What do we expect someone with EDS to "look" like? Does one have to have stretchy skin and be able to do ample "tricks" with skin and joints in order to look like one has EDS. There isn't a certain facial characteristic, or "look" to EDS. Except for some Vascular types, that will present with the listed facial characteristics, but some will not. EDS is a group of inherited disorders of connective tissue, not one disorder with a single expression. Many individuals with EDS, even those with the same clinical diagnosis, are dissimilar and cannot be easily distinguished from someone without EDS except by a physician familiar with the disorder. EDS needs an individualized diagnoses based on the characteristics/symptoms presented.

Myth: "That's just the way you are." or "That's just the way you were born." or "I don't know why that happened." or "I never saw that before."
Fact:: Based on the experience of people with EDS: Not unless there is a blatantly obvious defect or medical problem that jumps out to the physician. Or the blood work/testing comes back positive for a specific medical condition - Most EDSers have heard these words. If symptoms seem out-of-the-norm, unusual, not often seen, or the physician can not explain why, then, they should be investigated further - Especially if that patient is a child, or an adolescent, they should be referred to a Geneticist. Characteristics/symptoms of EDS seen (in children/adolescents/young adult) by physicians (inexperienced in EDS), that were overlooked and not pursued
any further. Thin translucent skin, with veins easily seen (face,chest, abdomen, thigh), fragile skin, easy bruising, abnormal (widened, dystrophic) scar formation, muscle hypotonia, recurring hernias, hypermobility (shoulders, joints, hands), frequent joint (hip) dislocations/subluxation, chronic joint and limb pain, molluscoid pseudotumors, spheroids, tendon rupture, clubfoot, early onset varicose veins, arterial/intestinal/uterine rupture, arteriovenous fistula, pneumothorax/ pneumohemothorax, rectal prolapse, surgery complications (e.g., wound dehiscence, bleeding, recurrent hernias, skin gaping/tearing, poor wound healing).

Myth: "Your just clumsy, that's all."
Fact:: Based on the experience of people with EDS: They report that they were clumsy as children and some still are today. They always seem to get hurt very easily. Children with EDS illustrated a higher incidence of foot and ankle problems, due to ligamentous laxity. Some common problems reported due to hypermobility; ankle instability, clubfeet, a flat arch, intoeing and outoeing position. It has been said, "That an EDS child could trip over the patterns in a rug." If you notice that a child seems to get hurt (stitches, sprains, breaks, bruises, wide scars (atrophic papyraceous appearance) gaping wounds) more than other children, they should be evaluated by a Geneticist to see if they might have a connective tissue disorder.

Myth: "It's only growing pains."
Fact:: Many folks with EDS have been told that they just had "growing pains", some way into adulthood. And that they would grow out of it. "Growing pains occur in 20% of children aged 2 to 12. Usually, a doctor determines a child has growing pains only by eliminating other conditions." This diagnosis is made after ruling out all organic pathology: inflammatory/noninflammatory, infectious, post-infectious, traumatic, metabolic, tumoral, vascular, hematologic, orthopedic, and benign pathology of children." (Kohmen L, Magotteaux J. "Acute nocturnal and recurrent pain of the limb in Children." Rev Med Liege. 2004; June; 59 (6): 363-6) "Chronic frequently debilitating pain of early onset and diverse distribution is a constant feature in most individuals affected with different types of EDS." "Individuals with EDS experience frequent and severe pain throughout much of their lives. EDS should be considered in the differential diagnosis of chronic musculoskeletal pain." (Sachet.et.al -"Chronic Pain is a Manifestation of the Ehlers-Danlos Syndrome" J Pain/symptoms/ management, 1997; Vol 14, (2), 88-93 see this article in Library section) Those with EDS experience a higher incidence of foot and ankle problems, due to ligamentous laxity. These problems can contribute to degenerative joint disease in the knees and hips. It seems logical that malalignment in the extremities could lead to abnormal forces on the joints and premature degeneration.
web site by ~ Lynn Sanders