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How is the family of a person with Ehlers Danlos syndrome affected?

How is the family of a person with Ehlers Danlos syndrome affected?

With this type of inheritance pattern the EDS gene is dominant. This means it overrides the effects of the other gene in the pair. Therefore if a parent who has EDS contributes the Ehlers-Danlos gene and the other parent contributes a normal gene the child will inherit the disorder.

How do you deal with Ehlers Danlos?

Coping and support

  1. Increase your knowledge. Knowing more about Ehlers-Danlos syndrome can help you take control of your condition.
  2. Tell others. Explain your condition to family members, friends and your employer.
  3. Build a support system. Cultivate relationships with family and friends who are positive and caring.

What kind of doctor manages Ehlers Danlos?

Rheumatologists and EDS The Ehlers Danlos Syndromes are categorized as “connective tissue disorders,” and it is rheumatologists who are supposed to specialize in such conditions.

What is the life expectancy of someone with hypermobile Ehlers Danlos Syndrome?

Patients with the classical and hypermobility forms of Ehlers-Danlos syndrome have a normal life expectancy. About 80% of patients with vascular Ehlers-Danlos syndrome will experience a major health event by age 40 and the life expectancy is shortened, with an average age of death of 48 years.

Can you get EDS If parents dont?

EDS can be caused by a new genetic mutation, that is, a mutation that occurs for the first time in a child and is not inherited from parents.

Can kids with EDS play sports?

Contact sports, such as soccer, football, and rugby, generally should be avoided. High-impact activities also should be avoided by most patients with EDS. These include running and basketball. Baseball, which requires a lot of running, also should be mostly avoided.

What supplements help EDS?


Symptom Nutritional supplement Dose
Osteoporosis/ MSM/silica 1500 mg/3 mg/day
Bone fracture Calcium/vitamin K 500 mg/35 μg/day
Magnesium 200 mg/day
Muscle weakness/ Carnitine 250 mg/day

How do you explain EDS to someone?

Ehlers-Danlos syndrome (EDS) is a disease that weakens the connective tissues of your body. These are things like tendons and ligaments that hold parts of your body together. EDS can make your joints loose and your skin thin and easily bruised. It also can weaken blood vessels and organs.

What triggers EDS?

Causes. EDS happens when your body doesn’t make a protein called collagen in the right way. Collagen helps form the connections that hold your body’s bones, skin, and organs together. If there’s a problem with it, those structures can be weak and more likely to have problems.

What is HSD?

Hypermobility spectrum disorders (HSD) are a group of conditions related to joint hypermobility (JH). HSD are diagnosed after other possible conditions have been excluded, such as any of the Ehlers-Danlos syndromes (EDS) including hypermobile EDS (hEDS). HSD, just like hEDS, can have significant effects on our health.

Does hypermobile EDS get worse with age?

The most common types of EDS (classical, classical-like, and hypermobile) do not greatly affect life expectancy. However, symptoms may become more severe as patients age and joints that have been dislocated multiple times become painful. Everyone’s bones become weaker with age.

Will I end up in a wheelchair with EDS?

Some patients with EDS may require specialized mobility devices, such as a wheelchair or a scooter, and a walker, crutches or a cane for mobility. However, care should be taken so that joints and other areas of the body affected by the disease are not injured by shifting weight when, say, walking with a cane or crutch.

What should I know about Ehlers Danlos syndrome?

Ehlers-Danlos syndrome 1 Diagnosis. Extremely loose joints, fragile or stretchy skin, and a family history of Ehlers-Danlos syndrome are often enough to make a diagnosis. 2 Treatment. 3 Lifestyle and home remedies. 4 Coping and support. 5 Preparing for your appointment.

How are braces used to treat Ehlers Danlos?

Exercises to strengthen the muscles and stabilize joints are the primary treatment for Ehlers-Danlos syndrome. Your physical therapist might also recommend specific braces to help prevent joint dislocations. Surgical and other procedures

Are there genetic tests for hypermobile Ehlers Danlos syndrome?

Genetic tests on a sample of your blood can confirm the diagnosis in rarer forms of Ehlers-Danlos syndrome and help rule out other problems. For hypermobile Ehlers-Danlos syndrome, the most common form, there is no genetic testing available. Care at Mayo Clinic

Is there an International Classification for Ehlers Danlos?

In 2017, the International Classification for the Ehlers-Danlos Syndromes was published, in which thirteen descriptive subtypes are recognized. The 2017 International Classification most recently outlines a classification based on underlying genetic causes (Group A-F) that is used for research purposes.