Ehlers-Danlos Awareness Month: Facts 29-31

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Fact #29: EDS can also be accompanied by blood disorders such as clotting and platelet abnormalities. Skin that is easily bruised occurs in all types of EDS to varying degrees and is essentially caused by the fragility of the body’s capillaries.

Fact #30:  Connective tissue can surprisingly also be found in the bones and blood as well as being the glue that holds the body together inside and out. Collagen alone is found in tendons, ligaments, skin, the cornea, cartilage, bone, blood vessels, the gut, and intervertebral discs. All of this helps explain the endless possible complications and outcomes of EDS.

Fact #31: To learn more about EDS you can visit the Ehlers-Danlos National Foundation’s website

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Ehlers-Danlos Awareness Month: Facts 26-28

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Fact #26: It is recommended that people with EDS do not play competitive or contact sports due to the increased risk of injury, as well as the pressure they put on the fragile bones, joints and arteries.

Fact #27: Women with EDS can become pregnant, but should first consult with a cardiologist and high risk obstetrician to make sure that it’s safe. A conversation with a genetic counselor to understand how EDS is inherited is also recommended.

Fact #28: EDS can affect endless parts of the body, but has “variable expression,” so each person is affected differently, even within the same family. While there are features that are frequently seen in many people with the disorder not all people will exhibit these features.

Ehlers-Danlos Awareness Month – Facts 22-25

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Fact #22: Those with EDS (especially the vascular type) are at an increased risk of arterial rupture (such as aortic dissection) which if not promptly diagnosed and treated can lead to death. If you have or suspect EDS and experience sudden pain in your chest, back, shoulders or jaw (often described as severe and ripping in nature) it is extremely important to seek emergency medical attention. Be sure to divulge your diagnosis and insist that the proper imaging tests be performed – such as an MRI, transesophageal echocardiogram or CT (X-rays and EKGs will not be able to rule out the possibility of arterial rupture or dissection). Do not allow yourself to be dismissed before the possibility of those complications is definitively ruled out.

Fact #23: Raising EDS awareness is extremely important in order to help those with the disorder receive early diagnosis and with it proper management and treatment.

Fact #24: EDS carries many of the same and/or similar symptoms of several other genetic connective tissue disorders such as Marfan Syndrome and Loey-Dietz Syndrome. It is not uncommon to have what appears to be a mix of more than one tissue disorder or for your diagnosis to change later in life from one to the other as more symptoms appear and more is learned about these conditions. This is another reason close monitoring is important.

Fact #25: The mascot/symbol of EDS has become a zebra or zebra stripes. The reason behind this is because EDS is what’s considered a “zebra diagnosis” aka a surprise, rare diagnosis. This is based on the saying “when you hear hoofbeats behind you, don’t expect to see a zebra” because the more likely and logical explanation would be that they belong to a horse.

Ehlers-Danlos Awareness Month – Fact #10-13!

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Fact #10: In many cases those with EDS do not respond to local anaesthetic properly or at all. This may mean complete failure of the anaesthetic to freeze the intended area, a much lower amount of numbness, or a much shorter duration of effect. (I am one of those people and this can result in some fairly traumatizing medical procedures – especially when doctors won’t take your word for it).

Fact #11: Possible cardiovascular manifestations of EDS include valvular heart disease (such as valvular incompetance) as well as artery dilation (the weakening of the walls of certain arteries, and/or veins, more commonly associated with certain types of EDS). For those at risk an annual echocardiogram is recommended in order to monitor the heart and aorta and to help prevent more serious complications by early intervention if needed.

Fact #12: EDS is an autosomal dominant genetic disorder (apart from types 6 and 7C) meaning if a parent has the disorder they have a 50/50 percent chance of passing it onto each child they have. Not everyone with EDS has inherited the disorder from a parent though. It is estimated that about half of those with EDS received it via what’s known as “spontanues mutation”. This is when the eds causing gene becomes mutated all on it’s own. But, once the gene mutation is in the family from then on it carries the 50/50 chance of being passed on. The gene can only be inherited from a parent, it does not skip generations.

Fact #13: EDS widely varies in severity and the onset of symptoms is often gradual. Oftentimes a diagnosis is only made when after many years of unexplained symptoms there become enough to connect the dots back to the disorder. Because of the limited awareness of the disorder among doctors the road to diagnosis can be agonizingly slow and frustrating. The link between symptoms can often go unrecognized entirely.

Ehlers-Danlos Awareness Month – Fact #5!

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EDS fact #5 (info provided by the EDNF): Clinical manifestations of EDS are most often joint and skin related and may include: joint hypermobility; loose/unstable joints prone to dislocations and/or subluxations; joint pain; early onset of osteoarthritis, fragile skin that tears or bruises easily, slow and poor wound healing and much more.

Ehlers-Danlos Awareness Month – Fact #4!

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In honor of Ehlers-Danlos Syndrome awareness month, here’s EDS fact #4 (info provided by the EDNF): Each type of EDS is a distinct disorder that “runs true” in a family. This means that an individual with Vascular Type EDS will not have a child with Classical Type EDS. 

Ehlers-Danlos Awareness Month – Fact #3!

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In honor of Ehlers-Danlos Syndrome awareness month, here’s EDS fact #3 (provided by the EDNF): There are six major types of EDS, each classified according to their manifestations of signs and symptoms. 

Ehlers-Danlos Awareness Month – Fact #2!

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In honor of Ehlers-Danlos Syndrome awareness month, here’s EDS fact #2 (provided by the EDNF): The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a “glue” in the body, adding strength and elasticity to connective tissue. 

Ehlers-Danlos Syndrome Awareness Month!

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In honor of Ehlers-Danlos Syndrome awareness month, here’s EDS fact #1 (provided by the EDNF): Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. 

The mascot for EDS has become a zebra or zebra stripes. The reason behind this is because EDS is what’s considered a “zebra diagnosis” aka a surprise, rare diagnosis. This is based on the saying “when you hear hoofbeats behind you, don’t expect to see a zebra” because the more likely and logical explanation would be that they belong to a horse.