FAQ

Is this blog just going to be about Ehlers-Danlos, chronic illness & medical stuff?

No. Although I will be posting on a semi-regular basis about Ehlers, chronic illness and/or anything medical related, M.I.T.M will also be about life in general.

What do you mean by life in general?

Life, in general, will include, but not be limited to >

  • the relatable ups & downs of day-to-day life
  • discussing taboo topics that no-one really likes to talk about
  • using memes & humour for interpretation
  • the positive/negative aspects of society as we know it
  • anything & everything (within reason/moderation)

What is Ehlers-Danlos?

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

Do you have a Facebook page?

Yes. @essie.mitm

Can I contact you?

Yes. Madness in the Method – Contact Form

How do I find you on Pinterest?

Madness.inthe.Method (M.I.T.M)

Will, there be anymore FAQ added?

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

If you have any questions – feel free to ask! 😊

How often will you be blogging?

It would be really nice to publish at least 2 posts a week, but with the hustle & bustle of life, having shitty days with the EDS, and/or the complexity of a topic that I’m writing about at the time, it may only be once a week – or even longer.

Why Madness in the Method?

Madness in the Method

When did you get diagnosed with EDS?

May 2019.

How long did it take to get a diagnosis?

Just over 14 years.

How old were you when you got diagnosed?

Typically a diagnosis of Ehlers-Danlos Syndrome will happen as a young child/teenager/young adult, but in my (individual) case – I was diagnosed in my late 40’s.

How do they diagnose EDS?

With the subtype that I have (type III/hEDS) the genetic basis is still unknown, so a diagnosis can only be established from a strict/complex diagnostic criteria checklist which includes;

  • Beighton Scale/Score
  • Family History
  • Medical History
  • Symptoms/Signs/Features
  • Exclusion of other heritable/acquired connective tissue disorders
  • Exclusion of alternative diagnoses

For diagnosing the other 12 EDS subtypes; the above criteria checklist + genetic testing.

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

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

What if my doctor keeps dismissing my symptoms even though I know something is wrong?

Based on my own personal experiences – NEVER EVER HESITATE in getting as many opinions as you need until someone finally listens and takes you seriously. (Broken Record)

What are the most common EDS symptoms?

  • Chronic Pain
  • Muscle Pain/Muscle Fatigue
  • Loose Joints/Joint Hypermobility
  • Subluxations/Dislocations
  • Premature & Chronic Degenerative Joint Disease (Osteoarthritis)
  • Stretchy Skin/Soft Velvety Skin
  • TMJ (Temporomandibular Joint Syndrome)
  • Poor Healing/Bruise Easy/Atrophic Scarring
  • Gastrointestinal Issues (ie: reflux)

NB: These are not the only symptoms associated with Ehlers-Danlos, and each individual will have symptoms unique to their own EDS. This list is just some of the most common ones, but if you would like to know more about symptoms, and/or the other types of EDS, please visit > Ehlers Danlos Syndrome Society for further information.

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 by 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 the EDS Society > What is HSD?

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?

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 VERY RARE vEDS (vascular) subtype due to the possibility of organ/vessel rupture, but life expectancy is usually not affected by the other types of EDS.

Why is EDS always associated with a zebra?

Fun fact: A group of Zebras is called a dazzle! 🤩🦓🤩

There are 2 reasons why you will see and/or hear about a zebra when it comes to Ehlers Danlos Syndrome. 1) 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 have identical symptoms, identical types or identical experiences. 2) >>>

Hugs / Peace Out! Essie ❣