May is EDS Awareness Month post 5

May is EDS Awareness Month, I am a little late to the party as I had pretty serious Neurosurgery on the 9th May so I am still in the early stages of recovery but I am going to contribute the best I can and will do 31 days of blog posts which will take me into June.


I will be answering @taylers.danlos.syndrome‘s 31 EDS Awareness Month Challenge questions, inter-cut with photos and EDS titbits. Go back to post 1 to see the 31 questions in full.


***Disclaimer*** Nothing on these posts should be taken as medical advice, I am speaking from personal experience.



Photo taken by @OscarVinter

[#imagedescription a photo of Charlie in bed from the side, her head, neck and shoulders are in shot. She is wearing a neck brace, glasses, in ear headphones, a white top and a bandage support on the visible wrist. She is using a tablet which is angled above her head on an arm which is attached to a hospital style bed table. One of her hands is reached out to the tablet. Across the bottom of the photo is a semi-transparent white banner with writing in black font, 'Are you Stretchy?']



Are you “stretchy”?


A lot of people with EDS or one of the other many connective tissue disorders have stretchy or loose skin. My stretchy skin is not extremely pronounced, it was most noticeable on my stomach and around my neck, where the skin could be stretched out and was sometimes a bit flappy. However since my cervical fusion a couple of weeks ago the skin on my neck does not hang as much, presumably because they had to pull it back when stitching the back of my neck up.


[image description: Charlie is lying on a hospital bed, smiling,

as she is wheeled away from surgery, there is some visibly

loose skin on her neck under her chin]


Although my stretchy skin is not overly visible it becomes more apparent if I have a scar, as like many with EDS instead of fading my scars widen over time. I had laparoscopic surgery in 2016, most laparoscopic surgeries leave almost no scar, my scars get bigger and more noticeable each year. It will be interesting to see how my surgical fusion scar progresses.


EDS titbit or tidbit as the Americans say:


The Ehlers-Danlos Syndromes are a group of Connective Tissue Disorders. The current classifications, which was updated in 2017 recognises and names 13 distinct types of Ehlers Danlos Syndrome.


What is a connective tissue disease or disorder?

‘Connective tissue diseases are actually a group of medical diseases. A connective tissue disease is any disease that has the connective tissues of the body as a primary target of pathology. The connective tissues are the structural portions of our body that essentially hold the cells of the body together. These tissues form a framework, or matrix, for the body.’

(https://www.medicinenet.com/connective_tissue_disease/article.htm#what_is_a_connective_tissue_disease, William C. Shiel Jr., MD, FACP, FACR, Chief Editor)


How many connective tissue diseases and disorders are there?


‘There are over 200 disorders that involve connective tissue. Certain disorders are characterized by overactivity of the immune system with resulting inflammation and systemic damage to the tissues (eg, systemic lupus erythematosus [SLE] and juvenile idiopathic arthritis [formerly known as juvenile rheumatoid arthritis]). Other disorders involve biochemical abnormalities or structural defects of the connective tissue. Some of these disorders are inherited, and some are of unknown etiology.’ (Introduction to Connective Tissue Disorders in Children, by Frank Pessler , MD, PhD, Braunschweig, Germany)

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