Ehlers-Danlos- Syndrome (EDS)

An unusual, invisible, rare and painful, lifelong disabling clinical and genetic entity.

Ehlers–Danlos Syndrome (EDS) is a group of genetic connective tissue disorders.

EDS is a rare and obscure misunderstood condition.

Symptoms are various and may include loose joints, fractures,  dislocation, bruises, stretchy silky velvet skin, and abnormal scar formation. Chronic pain, gastrointestinal problems, severe bleeding and much much more…

 

Same symptoms are typically noticed at birth or in early childhood, other later in life or during health complication or surgery. Just to mention few, complications may include aortic dissection, heart problems, joint dislocations, scoliosis, chronic unmanageable pain, severe bleeding, and rapture of internal organs and early osteoarthritis.

EDS is known to be a collagen disorder due to a mutation in one of more than a dozen different genes.

The specific gene affected determines the type of EDS. Some cases result from a new mutation occurring during early development while others are inherited in an autosomal dominant or recessive manner.

This result in defects in the structure or processing of collagen.

The diagnosis is tedious and stressful, and may be confirmed by a Genetic professional, with genetic testing, and or a skin biopsy. People may be misdiagnosed with hypochondriasis, depression, or chronic fatigue syndrome.

Once you have been diagnosed with EDS, more complicated health test may occur to determinate your type, theinfluence of the condition on your organs and other health factors.

This condition is debilitating and disabling, and there are no current cure.

Generally speaking, treatment is supportive in nature; allopathic medications are used to palliate the pain (opioid and antidepressant) with much side effect and poor result. Physical therapy and bracing may help strengthen muscles and support joints. While some types of EDS result in a normal life expectancy – although, with much life health difficulty – those that affect blood vessels generally result in a shorter life expectancy.

 

Research say that EDS affects about 1 in 5,000 people globally. The prognosis depends on the specific individual type.Excess mobility was first described by Hippocrates in 400 BC. The syndrome is named after two physicians, Edvard Ehlers from Denmark and Henri-Alexandre Danlos from France, who described it at the turn of the 20th century.Holistic Health approach may help to alleviate some of the symptoms, it can also help to alleviate emotional distress and help overcome grief and loss. Holistic Health approach may help to understand life journey and embrace oneself despite disability and difficulty. Homeopathy, psychotherapy, healing, flower therapy and counseling are less invasive then other modality.

I'm not a specialized Geneticist, but  knowing and experiencing EDS myself, I can provide you with individual emotional support;

Holistic specialized and applied modality and a fair assessment of your individual case.

Every EDS individual has his own identity and own understand of their condition.

Each case is unique. 

Each case deserves to be acknowledged and supported.

For more specialized information please visit The Ehlers Danlos Sociaty    :  WWW.EHLERS-DANLOS.COM  

                                                           

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