What is Ehlers Danlos Syndrome?

The process of diagnosis often feels like it moves in reverse. It is like being given 1000 puzzle pieces. The pieces are clearly laid out in front of you, but you don’t know which pieces are significant, how they fit together, or if all of these pieces even belong to the same puzzle.

Symptoms include (but are not limited to):
-hyperextensible skin
-velvety soft skin
-stretch marks (even at a young age/non-pregnancy related)

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-atrophic scarring
-keratosis polaris
-hernia
-light blue sclerae (ring around the iris)
-gingival inflammation and gum loss
-hypoplastic lingual frenulum (tissue under your tongue that connects to the bottom of your mouth is small or missing- can you touch the tip of your nose with your tongue?)
-difficulty swallowing foods (dysphagia)
-difficulty speaking (dysphonia)
-reflux
-recurrent or chronic gastritis
-delayed gastric emptying
-defecatory dysfunction
-abdominal pain and bloating

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-food intolerance
-organ prolapse
-valvular regurgitation
-mitral valve prolapse
-vericose veins
-low progressive aortic root dilatation
-raynaud’s phenomenon
-palpebral ptosis (drooping upper eye lids)
-pelvic prolapse
-heavy/painful periods
-incontinence
-general joint hypermobility

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-recurrent dislocations
-recurrent soft tissue lesions
-temporomandibular joint dysfunction (pain and compromised movement of the jaw)
-chronic and recurrent non-inflammatory joint pain

– severe bruising

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-chronic generalized pain
-muscular pain
-myofacial neuropathic pain
-osteoarthritic pain
-early osteoarthritis
-hypotonia (weak muscle tone)
-recurrent muscle cramps
-fibromyalgia
-high arched narrow palate
-flat foot or cavus foot (arches that are too high)
-pectus excavatum (breastbone sinking into chest)
-mild scoliosis (spinal curvature)
-dorsla hyperkyphosis (rounded upper back)
-lumbar hyperlordosis (curving inward of the lower back)
-minor asymmetry of the lower limbs
-non-postmenupausal reduced bone mass
-Marfanoid habitus (resembling marfans syndrome)
-chronic fatigue syndrome

-Chiari Malformation

chiari

-sleep disturbances
-impaired memory and concentration
-headache and migraine

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-recurrent paresthesia (pins and needles feeling)
-Dysautonimia (autonomic nervous system dysfunction)
-POTS (postural orthostatic tachycardia syndrome -a common form of dysautonomia)
-sensory sensitivity
-clumsiness

If you are wondering how so many things could be going wrong in one body, you are not alone. Most physicians feel the same way, which is why Ehlers Danlos is so commonly misdiagnosed as anxiety and depression. Patients are often seen as drug seekers, doctor shoppers, and hungry for attention. The average amount of time it takes to receive a correct diagnose is between ten and twenty years.

Ehlers Danlos syndromes are a group of inherited connective tissue disorders that effect how a body produces and interacts with collagen. Collagen is found in every system of the body, which means that the effects of Ehlers Danlos syndrome can be found in every system of the body.

Here’s a fun little jingle for any medical professional reading, “If you can’t connect the issues, think Connective Tissues!”

Once you arrive at connective tissues being the missing link, you can see the whole of what is actually happening in the body.
You have been handed the top of your puzzle box, the full picture. You know what you are looking at, you can begin to put your puzzle pieces together.

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