May is EDS Awareness Month post 3

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 a young white woman with brown hair, she is centre frame and wears a black face mask. She also wears a white and green neck brace and a long-sleeved black top and sits in a black wheelchair, although only her head and shoulders are visible. Behind her is a grey wooden fence. Across the bottom of the photo is a semi-transparent white banner with writing in black font, 'Do you have any comorbid illness?']


3. Do you have any comorbid illnesses?

Yes, I have almost a full-house of comorbid illness.


I was first diagnosed with Chronic Fatigue Syndrome or ME, however received very little treatment for this and as it is such a badly misunderstood illness with arguably a greater level of prejudice, mistreatment and ignorance from medical communities (even compared with EDS, which is up there as a mistunderstood illness) I let it sort of drop of my diagnosis list. (For a better understanding of ME look no further than https://www.meaction.net/ or Jen Brea's documentary, Unrest https://www.unrest.film/) I certainly fit the criteria and experience PEM (Post-exertional Malaise) or Post-exertional Neurological Exhaustion which for me feels like having a very specific flu.


Then I had a Pulmonary embolism with no obvious trigger. Then Factor V Leiden Deficiency. A genetic mutation that makes me more prone to blood clots.


Then I was diagnosed with Idiopathic (no known cause) Gastroparesis, I was diagnosed by a Gastric Emptying study, which is a scan where you eat some egg with radioactive material and they document it as it moved through your digestive tract, none of this egg moved beyond my stomach as it was almmost fully parralysed and we were told I would never know why I had this, the sudden onset of continually declining health over a few years at this point in my early twenties was 'bad luck' and I would never get better. I was put on a liquid diet and kept getting skinnier and sicker. At my thinnest I was about 7 and a half stone at 5ft 5inches.


A few months later I was diagnosed with Endometriosis after a decade of being told to suck it up, periods are meant to be horrible. Again, this was all 'bad luck'. If you want to understand more about Endometriosis from a historical, sociological, scientific and personal illness memoir perspective Abby Norman's, Ask Me About My Uterus , is awesome (https://www.abbynormanwriter.com/book) and it's available on audibook.


All of these diagnosis' sadly took a lot of research and self-advocacy and fighting on my behalf something I was priviledged enough to have the time and access to do.


So eventually after a life-time (well 26 years) of symptpms and signs and a lot of research on my behlaf I got an EDS diagnosis which also pointed in the direction of a POTS (Postural Orthostatic Tachycardia Syndrome) and MCAS (Mast Cell Activation Syndrome) diagnosis.


After a long time battling with spine and neck issues being told it was all psychological my EDS diagnosis and my own research led to a diagnosis of Scoliosis, Syringomyelia, chronic CSF leaks, Cerviomedullary Syndrome caused by Atlanto-axial Instability and Craniocervical Instability.


"Excessive mobility of the craniocervical junction can affect upper spinal cord and brain stem compression which manifest as a syndrome known as “cervicomedullary syndrome”, basically, amongst many reasons, due to the stretching of the neural elements at these levels and Vertebral Artery flow disturbances." Dr Gilete, https://drgilete.com/7-things-know-craniocervical-instability/


I had a fusion in my neck from my skull down all the cervical verterbrea to T1, the first vertebrea of the Thoracic spine and a decompression of my jugular veins at C1. I had this done on the 9th May 2019, less than a month ago and am still fresh in recovery so I am anxious about speaking too soon but incredibly it seems like many of my comorbid conditions are in remission. But watch this space to see how my recovery progresses.


EDS titbit or tidbit as American's say: EDS can cause many comordid conditions (as evidenced by my ridiculous body). EDS can cause issues in almost any part of the body, it is not just "bad luck". One of the motto's for the EDS toolkit is, "If you can't connect the issue, think connective tissue". In other words ''Non-specific and medically unexplained symptoms are usually real and should not be dismissed. It can be easy to make a big difference to the quality of life of some of your most complex patients with a few simple and inexpensive measures, but the journey starts with recognition.' https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/ehlers-danlos-syndromes-toolkit.aspx





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