Discover all about Me & EDS

Finding Purpose in Pain

In 2022 Lorraine was diagnosed with a life changing chronic condition - Hypermobile Ehler-Danlos Syndrome leading to the realisation that she always knew something was odd and quirky about her and the dawning of a new middle age - one where menopause meets maintenance. Her blogs on this website will mainly feature tales of the lack of tension of her joints and her issues with tissues! 

A whimsical writer with a real adoration for alliteration, Lorraine delights in being curious and always enjoying writing up the little things in life which add up to a lot.  She has had her words seen in magazines, websites, dramas and much more. A Latina Brit who flips between states, Lorraine is always on her quest and will take many a side mission on purpose just for a little sit down and second breakfast and lunch. And snacks!

What is Ehlers-Danlos Syndrome?

The Ehlers-Danlos syndromes are a group of genetic connective tissue disorders. Connective tissue is the scaffolding of the body and collagen is the glue that holds connective tissue together. For me and my fellow Zebras our collagen is genetically faulty and more stretchy. A bit like chewing gum!  

There are currently thirteen types. Each type is in itself a distinct condition caused by a different gene mutation. The most common type of EDS is thought to be the hypermobile type (formerly known as the hypermobility type or type 3). The medical literature states that it affects 1 in 5,000 people however this statistic is based on research that is out-of-date and hEDS/HSD frequently go undiagnosed or are misdiagnosed as other conditions. 

HSD and possibly hEDS are likely to be common. The classical and vascular types are rare, with other types being rarer still. It is probable that all the types are under diagnosed to some degree.

The diagnosis criteria changed a few years ago. The 2017 EDS International Classification recognises thirteen types of EDS and defines for the first time some related conditions, the hypermobility spectrum disorders (HSD) which have similar symptoms to hypermobile EDS (hEDS). The term joint hypermobility syndrome (JHS) is no longer used.

ISSUES WITH TISSUES

  • CONNECTIVE TISSUE IS FOUND THROUGHOUT THE BODY.
  • IT PROVIDES SUPPORT, PROTECTION, AND STRUCTURE TO OTHER PARTS OF THE BODY.
  • CONNECTIVE TISSUE DISORDERS ARE CAUSED BY ISSUES THAT PREVENT CONNECTIVE TISSUE FROM FUNCTIONING PROPERLY.
  • COLLAGEN IS THE PRIMARY COMPONENT OF CONNECTIVE TISSUE. THERE ARE DIFFERENT TYPES OF COLLAGENS WITH DIFFERENT FUNCTIONS.
  • THE EHLERS-DANLOS SYNDROMES ARE CAUSED BY CHANGES IN THE GENES THAT AFFECT THE STRUCTURE AND FUNCTION OF COLLAGEN AND RELATED CONNECTIVE TISSUE PROTEINS.

The 13 Types of EDS are:

  • Arthrochalasia EDS (aEDS)
  • Brittle cornea syndrome (BCS)
  • Cardiac valvular EDS (cvEDS)
  • Classical EDS (cEDS)
  • Classical-like EDS (clEDS)
  • Dermatosparaxis (dEDS)
  • Hypermobile EDS (hEDS)
  • Kyphoscoliotic EDS (kEDS)
  • Musculocontractural EDS (mcEDS)
  • Myopathic EDS (mEDS)
  • Periodontal EDS (pEDS)
  • Spondylodysplastic EDS (spEDS)
  • Vascular EDS (vEDS)

TISSUE FRAGILITY

THE BODY’S ORGANS AND OTHER STRUCTURES ARE MORE VULNERABLE TO DAMAGE.

TISSUE PRESENTATION

TISSUE FRAGILITY CAN PRESENT AS EASY BRUISING AND POOR WOUND HEALING

TISSUE ISSUES

 FRAGILE SKIN, BLOOD VESSELS, ABDOMINAL ORGANS, EYES, GUMS, AND BONES.

I have Hypermobile Ehlers-Danlos Syndrome

I am gently learning that hEDS has affected me and my body and brain and my eyes my whole life. Below are some of the main issues with tissues that I have.

CHRONIC PAIN

I AM IN CONSTANT PAIN FROM HEADACHES, JOINT PAIN, BRUISING, FASCIA PAIN, EYE STRAIN, MUSCLE ISSUES, INJURIES.....

CHRONIC EYES

MY EYES ARE WEAK AND REQUIRE POWERFUL LENSES TO HELP ME SEE. I HAVE HAD A DETACHED RETINA IN 2023 AND X3 LASER EYE SURGERY TO HELP SAVE MY SIGHT

CHRONIC FATIGUE

MY BODY SPENDS A LOT OF ENERGY TRYING TO SIMPLY LIVE DAY TO DAY IN PAIN AND SO I GET FATIGUED QUICKLY

Frequently Asked Questions

Here are some answers to some of the most common questions I get asked.

No, there is no cure. It is a genetic mutation affecting connective tissue. 

Short answer is no. Connective tissue is everywhere, all over your body so no operation will stop it. However I have had operations to cause scarring to save my sight so sometimes some operations do help.

Currently I can manage my condition by being gentle with myself and pacing my activities. I work hard on reducing stress in a physical and emotional sense. I engage very rarely with people and events because it takes a lot of energy from me. I use a number of alternative therapies, meditation, diet, supplements and mental health resilience tool kits to keep my body, brain and soul going. 

Yes! There are a number of comorbitities that come with hEDS including PoTS, MCAS. I also have other issues including Sluder's Neuralgia, Endometriosis, Neurodivergence (HSP with HSS), Scoliosis. I am uncovering more and more issues and they seem to be related to hEDS. 

I have known only pain, only confusion but I have always been a person to find a reason to smile, make a joke, have a laugh. Life living in pain has taught me to take risks (within reason), to find the joy and celebrate the small things. I am very successful because I thrive in spite of my condition and my pain. 

I do feel scared and anxious a lot of the time but I have learnt to deal with so many scary situations and I am an advocate for mental health therapy and professional help and support. 

"When you hear hoof beats behind you, don't expect to see a zebra." Medical students are given this quote as a way to let them know that they should look for a common diagnosis for the symptoms they are given instead of the possibility of it being a rare case. This is why people with EDS refer to themselves as Zebras. I have spent a lifetime in and out of medical clinics being told that my blood tests are normal, that I simply have anxiety, that my joints being so loose is normal and an asset. After 40 years I finally got a diagnosis!

An excellent question and one that I am working on. I have written a book about Pain to learn about it. Pain is complex, it is both physical and emotional. It is a vast topic to pin down but I am curious about pain and how it affects me and my own personality. 

International Chronic Illness Speaker

I love to talk and I love to thrive even with pain. My purpose is to be a professional persistent pain patient and I actively talk to audiences around the world about my conditions. 

In this past year I have spoken at the prestigious ESTORIL Conferences as well as to audiences and organisations in Switzerland, UK, France and many more. 

Please do get in touch when you want me to talk to your teams and organisations about how to live and love Chronic Pain. 

CONTACT ME HERE TO HEAR ME ROAR