Gene me up Scotty

Hello Blooms,

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Firstly, I wish to take a moment to thank the individuals who reached out and said such positive things about my last blog post, Journaling and Riding the Depression Wave (w/ exercises). Secondly, you’ll be pleased to know storm Doris has come to an end and it goes without saying I am beyond relieved. I feel back to my old self again – the same 80-year-old trapped in a 19-year-old’s body.

The same body which happens to have Ehlers Danlos Syndrome, a condition which has impacted my life in a profound way, consequently inspiring my series here on From Bud to Bloom – the EDS chronicles. Ehlers Danlos Syndrome is a connective tissue disorder which affects collagen production within the body, causing widespread issues in different anatomical systems. The severity and presentation differ from person to person. However, there are different subtypes under the umbrella of EDS, 13 in fact, the most common being hypermobile EDS (hEDS) and clinical EDS. One of which I definitely have.

Yet in order to determine the specific type of EDS that I have, I was referred to the Centre for Life’s biomedicine wing, which works alongside the NHS and Newcastle University for a variety of reasons – yet I was today I was there for genetic testing.

The appointment was straight forward, we signed in at reception and I was seen by a lovely doctor named Michael Wright, who assessed my physical manifestations of EDS and recorded the shared symptoms which my family have knowingly experienced, before taking my blood which shall be analysed for a genetic marker. If the particular marker is present in my blood work, I have classical EDS – although it would still be on the mild end of the spectrum (meaning I wouldn’t have as many physical manifestations). Yet if this isn’t the case, hEDS will be the official diagnosis given to me from the biomedical team. It is my understanding that we are likely looking at hEDS, which I would prefer to be honest with you as I had already made peace with this preliminary diagnosis.

Now you may be asking yourself, what will come of a definitive diagnosis.

Well, it will provide 3 things

clarity

…as it replaces a question mark with a full stop

hope

…if in the future there is a treatment which works for my particular condition, I can gain access to this

opportunity

…as the EDS Society fund pioneering research into the identification and treatment of EDS, concerning the subtypes respectively. Therefore, receiving a letter of diagnosis can provide proof to researchers of my condition, shall I wish to participate in clinical trials.

Although one small catch remains, the results will be available in 4-5 months *crickets*

Therefore, the following blog post concerning this matter won’t be for quite some time, yet in the meantime, I would be greatly interested in hearing your experiences with EDS. If you are at all willing to take part in a collaborative blog post about your experience with EDS, please do contact me using the form below.

This being said I am thankful to have spent this time with you and to have your continual support.

I’m sending you all my love and gentle hugs.

Lori x

If you wish to explore my series, The EDS Chronicles, from the beginning – please see the list below.

zebra strong

The EDS Chronicles: Taking my autonomy back

The EDS Chronicles: skin deep

The EDS Chronicles: stripes w/ a 100% chance of fog

The EDS Chronicles: Fearless Christianity – praying upon the sick and vulnerable

The EDS Chronicles: Losing trust in professionals (1/2)

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