Question 1

how would i get diagnoses for eds?

Accepted Answer

Ehlers Danlos? : If you are referring to Ehlers-Danlos, your doctor will do a physical exam of your skin and joints. She may also do a skin biopsy looking for abnormal collagen.

Question 2

what is inheritance and pentrance of eds?

Accepted Answer

Depends: Ehlers danlos is a family of disorders, which has 6 major and several minor types. Given the multiple genes involved, it can be inherited in both autosomal dominant and autosomal recessive patterns, and can even spring from a de novo mutation. Penetrance depends on the type of mutation, and can therefore not be reliably calculated without more information.

Question 3

can i have eds and lupus at the same time?

Accepted Answer

Yes.: EDS has 11 types, all hereditary,all with gene mutations causing problems with collagen in skin,bone,blood vessels.Symptoms include stretchy easily bruised skin, double jointedness,back pain,flat feet,early arthritis,etc.
Lupus, an autoimmune disease, requires 4 of 11criteria.MalarorDiscoidrash,Photosensitivity,OralUlcers,Arthritis,Serositis,KidneyDz,Neurologic Sx's,Blood abn,immunologic,ANA.

Question 4

my husband has eds hypermobility can he get disabled?

Accepted Answer

Not necessarily: Good teaching in joint protection will prevent disability.  Fibromyalgia frequently accompanies people with hypermobility without apparent arthritis.  I encourage your husband to take care of himself so that he does not become disabled.  Living off of disability is a meager existence.

Question 5

are there any problem with hearing that occurs with eds?

Accepted Answer

Yes: There are multiple types of ehlers danlos syndrome and the different types have different genetics and problems.  The most common is eds type 3, joint hypermobility syndrome which is associated with loose joints and sometimes skin & joint and muscle pain. Hearing and visual problems are uncommon.

Question 6

can people with eds type 4 ( vascular type ) live normal?

Accepted Answer

Yes: Take extra vitamin c, have your blood vessels checked, finish your bucket list.

Question 7

what types of eds are associated with pain and/or chronic pain?

Accepted Answer

? Ehlers-Danlos Syn.: The most common pain associated with eds comes from the fact that the connective tissue supporting the joints becomes lax and allows chronic joint dislocations. These people frequently notice they are "double-jointed" but later experience the chronic dislocations. A more serious kind involves blood vessels where they can spontaneously rupture. Eds can also be a limited to the skin.

Question 8

is it possible for people with eds type 4 (vascular) to live normal lives?

Accepted Answer

Very difficult: True Ehler-Danlos type 4 is characterized by facial changes, translucent skin through which vessels can be seen , easy bruising, and uterine and cardiac problems related to medium and large artery damage. Each event is treatable to some degree, pregnancy is advised against, and some problems require emergency treatment. It is autosomal dominant. With good care one may live long but not normally.

Question 9

are there any base-line protocols for testing that are recommended for all types of eds?

Accepted Answer

Yes: Careful family history, physical exam, echocardiogram if indicated, skin biopsy for collagen typing, collagen gene mutation testing and lysyl hydroxylase or lysyl oxidase activity.

Question 10

can any doctors or people who've been treated for eds please tell me how to get diagnosis?

Accepted Answer

Clinical criteria: It is usually a clinical diagnosis made using a set of clinical criteria; however, there are some genetic tests that can look for some variants of eds.

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Doctor answers about:

Eds in elderly

A member asked:

How would i get diagnoses for eds?

A member asked:

What is inheritance and pentrance of eds?

A member asked:

Can i have eds and lupus at the same time?

A member asked:

My husband has eds hypermobility can he get disabled?

A member asked:

Are there any problem with hearing that occurs with eds?

A member asked:

Can people with eds type 4 ( vascular type ) live normal?

A member asked:

What types of eds are associated with pain and/or chronic pain?

A member asked:

Is it possible for people with eds type 4 (vascular) to live normal lives?

A member asked:

Are there any base-line protocols for testing that are recommended for all types of eds?

A member asked:

Can any doctors or people who've been treated for eds please tell me how to get diagnosis?

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