FAQ

What is Ehlers-Danlos Syndrome?

For a somewhat simple & “layman’s term” explanation of EDS > Ehlers-Danlos Syndrome

What are the most common EDS symptoms?

  • Chronic Pain
  • Subluxations/Dislocations
  • Joint Hypermobility
  • Degenerative Joint Disease (Osteoarthritis)
  • Stretchy Skin/Soft Velvety Skin
  • TMJ (Temporomandibular Joint Syndrome)
  • Poor Healing/Bruise Easy/Atrophic Scarring
  • Gastrointestinal Issues (ie: reflux)
  • Dysautonomia/POTS (Postural Orthostatic Tachycardia Syndrome)
  • Muscle Spasms (Fasisculations)
  • Flat Feet
  • Tinnitus
  • Raynauds

NB: These are not the only symptoms associated with Ehlers-Danlos Syndrome and each individual will have symptoms unique to their own type of EDS. This list is just some of the most common ones that are seen with Ehlers, but if you would like to know more about symptoms and/or the other types of EDS such as; vEDS (vascular), cvEDS (cardiac-valvular), etc – please visit > Ehlers Danlos Syndrome Society for further information.

How is EDS inherited?

There are 2 known inheritance patterns for the EDS syndromes > Autosomal Dominant and Autosomal Recessive. In Autosomal Dominant disease there is only 1 mutated gene passed down from one parent. In Autosomal Recessive disease there are 2 mutated genes passed down from each of the parents. Depending on the EDS subtype that is inherited [?] will determine if it is Autosomal Dominant or Autosomal Recessive?

Is EDS & JHS (joint hypermobility syndrome) the same thing?

No. JHS (*HSD) is a condition that features joints that easily move beyond the normal range – ie: double-jointed. JHS isn’t caused from an underlying disease, and often causes no symptoms and/or requires no treatment. EDS is an inherited condition (genetic defect in the collagen) that causes many different symptoms throughout the body which requires ongoing treatment. *HSD (hypermobility spectrum disorders) is superseding the JHS medical term. For a more in-depth explanation please visit > What is HSD?

Can EDS be cured?

No. There is no cure for Ehlers-Danlos Syndrome, but treatment can help manage the symptoms and prevent further complications.

What is the prognosis with EDS?

This depends on the type of EDS and the individual. Life expectancy can be shortened with the vEDS (vascular) subtype due to the possibility of organ/vessel rupture, but life expectancy is usually not affected with the other types of EDS.

Why is EDS associated with a zebra?

Fun fact: A goup of Zebras is called a dazzle! 🤩 There are 2 reasons why you will always see and/or hear about a zebra when it comes to Ehlers Danlos Syndrome > 1) because when you see a zebra, you know it’s a zebra, but no 2 zebras have identical stripes – just as no 2 individuals with EDS will have identical symptoms, identical types or identical experiences. 2) >

Will there be anymore FAQ added?

Yes. I will continue to keep adding them as more frequent questions pop up 🙂

Is this blog going to be all about Ehlers-Danlos & medical stuff?

No. Although there will be regular posts on Ehlers and/or anything medical related, MadnessintheMethod will also be about day-to-day life in general.

Is there a way to contact you?

Yes. Madness in the Method – Contact Form

How often will you be blogging?

It would be nice to publish at least 3 blog posts a week, but with the hustle & bustle of life, and/or having shitty days with the EDS, it may only be once a week.

Why Madness in the Method?

> Madness in the Method

Do you have a Facebook page?

Yes. Madness in the Method – Facebook

When did you get diagnosed with EDS?

I was diagnosed in May 2019, but have lived with Ehlers for all of my life.

How old were you when you got diagnosed?

Typically a diagnosis of Ehlers-Danlos Syndrome will happen when you are a child, but in my case – I was diagnosed in my late 40’s.

How long did it take for you to get diagnosed?

Just over 14 years.

Will you be able to provide and/or help with medical advice?

No. For any medical advice, regardless if it’s for EDS or something else – please see your G.P

Hugs / Peace Out! Essie ❣