May was EDS Awareness Month, I am a little late to the party as I had pretty serious Neurosurgery on the 9th May, a month ago today! 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 not necessarily in the order they were originally asked in, inter-cut with photos, an EDS titbits and throughout June a signpost to content about accessibility in LGBTQ+ community for Pride month. 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 in a wheelchair. She has medium length brown hair and sheilds her face from the sunlight with her right hand. She is on a train platform in front of a red waiting bench. She wears a white and blue stripped jumper and a white and green neck brace. She has a green coat and scarf on her lap. Across the bottom of the photo is a semi-transparent white banner with writing in black font, 'What is "your" normal?']


Although it is post number 8 I am answering question number 10 today.

10. What is “your normal”?


My health has fluctuated, deteriorated and changed so much in the last 5 years, it has never been consistent enough to have a period of normal, just when I have got used to a level of energy or a possible treatment, diet or pace of life that I think is keeping my health or illness at one level something changes. I no longer have a normal, my partner and I have to constantly adapt in a practical day to day sense but also our long term plans. Some people’s experience of chronic illness is very different and maybe I will find a normal, maybe I will one day be able to maintain some sort of routine. But for now life is precarious and we ride the waves of illness as safely and with as many moments of joy as we can, knowing to never be shocked, take on changes calmly and not be too rigid with our expectations or put too much pressure on my body and ability.


EDS titbit or tidbit as the Americans say: Kyphoscoliotic Ehlers-Danlos Syndrome (kEDS)

This type of EDS 'is caused by changes (mutations) in the PLOD1 gene or the FKBP14 gene and it is inherited in an autosomal recessive manner.' (https://rarediseases.info.nih.gov/diseases/2083/kyphoscoliotic-ehlers-danlos-syndrome) meaning you need to inherit two of the affected/mutated genes to develop the disorder, so both parents would need to have at least one affected gene, however if you only have one affected gene then you are a carrier but you do not present with symptoms or have the condition. If both parents are carriers some of their children may inherit both affected genes and have the illness, some may inherit one and be a carrier and some not inherit any of the affected genes.

For an other view of the types of EDS, which genes we know cause the different types, what protein the gene affects and if the pattern of inheritance is autosomal dominant or autosomal recessive check out this table from The Ehlers-Danlos Society: https://www.ehlers-danlos.com/eds-types/

The 'disorder characterized by hypotonia, early-onset kyphoscoliosis, generalized joint hypermobility, skin fragility, and ocular abnormality. ' (https://www.ncbi.nlm.nih.gov/books/NBK1462/)

'Major features:

-Congenital muscular hypotonia (progressive or non-progressive congenital or early-onset kyphoscoliosis)

-Generalized joint hypermobility with dislocations/subluxations (shoulders, hips, and knees in particular)' (https://www.ncbi.nlm.nih.gov/books/NBK1462/)

For more info on Kyphoscoliotic Ehlers-Danlos Syndrome (kEDS) check out the reference links:

https://rarediseases.info.nih.gov/diseases/2083/kyphoscoliotic-ehlers-danlos-syndrome

https://www.ncbi.nlm.nih.gov/books/NBK1462/

https://www.ehlers-danlos.org/information/kyphoscoliotic-ehlers-danlos-syndrome/


LGBTQ+ Is pride accessible signpost?

June is Pride month! Throughout June I will be signposting to content that asks the question is Pride accessible? And, if not, explore how it can become accessible. So whether you identify as part of the LGBTQIA+ community or whether you are an ally, ask yourself if the pride events you are attending are accessible and inclusive and how they can be more so. Watch this vlog by Aaron Ansuini

https://twitter.com/aaronlinguini?lang=en on ‘Accessibility At Pride’ with a focus on Neurodiversity: https://www.youtube.com/watch?v=cXL7M2gaeX8

Aaron Ansuini also started a non-profit called Let’s Get By Together check it out: https://www.letsgetbytogether.org/

I will be adding these 'is Pride Accessible' content signposts to my EDS awareness posts throughout June. Look out for them.

[#ImageDescription - Charlie, a young white woman is centre frame and smiles at the camera. She has short brown hair which partial goes across her face. She is holding a pride flag and wears a white stripy top and dark blue raincoat. She also wears a feather necklace which is red, yellow and turquoise. Only her upper body is in frame. There is a crowd of people blurred out behind her and buildings and a red double decker bus. Superimposed on the photo at the top of the image is a semi-transparent rainbow with the title Is Pride accessible?' in bold, black font].

70 views

Updated: Jun 9, 2019

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 not necessarily in the order they were originally asked in, inter-cut with photos, an EDS titbits and throughout June a signpost to content about accessibility in LGBTQ+ community for Pride month. 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 in her twenties in a hospital bed with various tubes coming from her nose and shoulders. She is smiling and one of her hands is doing a thumbs up. Across the bottom of the photo is a semi-transparent white banner with writing in black font, 'FUNNIEST EDS STORY']


Although this is post 7 of my EDS Challenge I have decided to answer question 13 @taylers.danlos.syndrome‘s 31 EDS Awareness Month Challenge questions. I am recovering from fairly major neurosurgery and although my recovery is going well the past couple of days have been emotional. So in the name of practicing self-care I have made the choice to answer a more light-hearted question and come back to the topics of pain, surgeries, hospital stays etc when I have the emotional energy to do so.

13. Funniest EDS story.


It took me a very long time before I could have a funny EDS story. It took being in a hospital where I was seen, listened to and was receiving appropriate and world-class treatment before I could see anything funny in what I was going through. I remember being faced with this same question last year and being full of so much anger at the injustice EDS patients and chronically ill and/or disabled people face I was finding it hard to see anything funny in my experience.


But a few weeks ago I got to the position where I was receiving incredible treatment from compassionate, understanding medical professionals and I finally got my funny EDS story...


I was in hospital in Barcelona recovering from a cervical fusion from c-0 to t-1 (my entire neck) and a jugular vein decompression at c-1. I had a team of world-class Neurosurgeons working on me. One of the Neurosurgeons, the most experienced of the team was something of a celebrity among other Spanish medical professionals who are in awe of him and quick to tell you a story of one of his incredible successes if his name is mentioned. We were told how he had recently been across the front pages of several newspapers for removing a tumour from a young girls brain that all other doctors had said was inoperable.


My surgery was 8 hours, I was out for 29 hours, I was in ICU for about a day (which I can't remember) for the next week I was on a mix of painkillers and sedatives (morphine with a tiny amount of ketamine to reduce the amount of morphine used), I think they reduced this over time. But from day 2 to about day 4 I was semi-lucid but hallucinating a lot! I could see faces and colours and dancing people all over the walls. Luckily my hallucinations were all fairly friendly and I was for the most part, quite comfortable with what I was seeing.


On about day 4 I convinced myself that because my brainstem was no longer compressed and my jugular veins were working correctly that I had developed some sort of superpower, I believed that my brain was working so well that I had developed some sort of true sight. I was seeing what was always there but only a few people with incredible brain power could see (I was clearly very high). I remember thinking that my new superpower would make me an incredible painter and possibly even an composer (I'm tone deaf). The chatter of the nurses outside became music that I sung aloud to my partner whilst attempting to wee for the first time without a catheter.


I convinced myself that this new superpower was a result of surgery, so much so that when this world-renowned surgeon came for one of my daily check ups I told him about my superpower. This was met with a kind smile and the worlds "it's the drugs".



EDS titbit or tidbit as the Americans say: ‘The clinical features to look for include: Fragile skin which can split easily with minimal trauma. This leads to significant scarring usually starting from childhood... Stretchy skin, Joint hypermobility...Easy bruising...Fragile and extensible tissues can also result in hernias, prolapse and cervical insufficiency.’ https://www.ehlers-danlos.org/information/classical-ehlers-danlos-syndrome/ This is a very brief overvew of the features for more information on Classical Ehlers-Danlos Syndrome, so to the link in the previous sentence.

Diagnosing Classical Ehlers-Danlos Syndrome:

‘(A) skin biopsy may be considered to confirm or rule out the diagnosis...This skin is looked at under an electron microscope to see if there are changes to the structure of the collagen fibres. The changes seen in classical EDS are known as ‘collagen flowers’ or ‘cauliflower fibrils’. https://www.ehlers-danlos.org/information/classical-ehlers-danlos-syndrome/

‘Some people with classical EDS have an alteration in either the COL5A1 or COL5A2 genes. If a gene change can be identified then genetic testing can be offered to other family members.’ https://www.ehlers-danlos.org/information/classical-ehlers-danlos-syndrome/

For a more indepth look at the possible symptoms and their frequency in people with cEDS go to: https://rarediseases.info.nih.gov/diseases/2088/classical-ehlers-danlos-syndrome#ref_8991



LGBTQ+ Is pride accessible signpost?

June is Pride month! Throughout June I will be signposting to content that asks the question is Pride accessible? And, if not, explore how it can become accessible. So whether you identify as part of the LGBTQIA+ community or whether you are an ally, ask yourself if the pride events you are attending are accessible and inclusive and how they can be more so. Read this piece by Bani Amor on 'How to make Pride truly accessible':

https://edition.cnn.com/travel/article/accessibility-planning-pride/index.html?fbclid=IwAR3pNEZuS6AOSk5Ddf7yp4O2SKkXnU0kxy5vKo3eWt5HXxA7TfBRzwm0y1Y

From here on out I will be adding these 'is Pride Accessible' content signposts to my EDS awareness posts throughout June. Look out for them.


[#ImageDescription - Charlie young white woman is centre frame and smiles at the camera. She has short brown hair which partial goes across her face. She is holding a pride flag and wears a white stripy top and dark blue raincoat. She also wears a feather necklace which is red, yellow and turquoise. Only her upper body is in frame. There is a crowd of people blurred out behind her and buildings and a red double decker bus. Superimposed on the photo at the top of the image is a semi-transparent rainbow with the title Is Pride accessible?' in bold, black font.]

84 views

Updated: Jun 9, 2019



June is Pride month! Throughout June I will be signposting to content by awesome LGBTQ+ disability advocates and activists who are asking the question is Pride accessible and inclusive? And, if not, exploring how it can become accessible. So whether you identify as part of the LGBTQIA+ community or whether you are an ally, ask yourself if the pride events you are attending are accessible and inclusive and how they can be more so. He is a great article by Alaina Leary to get you thinking:

https://rootedinrights.org/if-your-lgbtqia-pride-event-isnt-accessible-to-disabled-people-youre-missing-out/

[#ImageDescription - Charlie young white woman is centre frame and smiles at the camera. She has short brown hair which partial goes across her face. She is holding a pride flag and wears a white stripy top and dark blue raincoat. She also wears a feather necklace which is red, yellow and turquoise. Only her upper body is in frame. There is a crowd of people blurred out behind her and buildings and a red double decker bus. Superimposed on the photo at the top of the image is a semi-transparent rainbow with the title Is Pride accessible?' in bold, black font].


Photo taken by @OscarVinter. This photo was taken at Birmginham Pride 2018 and was the first Pride I was able to attend for many years due to illness and disability. Out of shot I am using my rollator, which was fairly new at this point. I grew up immersed in the gay community of the area I lived in, although at the time I did not understand my gender and sexuality and was a little too scared to explore it as much as I feel I should of now, growing up in that community I always felt accepted; although at the time I was not disabled. I now feel more comfortable with defining myself as a woman who plays with feminity and masculinity and my sexuality as fluid. Either way, term or no term the LGBT+ community has been an important part of my life from my teens and being able to attend pride for the first time in 5 years with the help of a rollator was important.

From here on out I will be adding'is Pride Accessible' content signposts to my EDS awareness posts throughout June. Look out for them.


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