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β™ΏπŸ’…πŸ Wannabe indie singer, UI/UX designer, chronically ill & disabled with #hEDS #MECFS. I tweet in French, English and Franglais from my sofa-bed somewhere in The Netherlands.
(She/Her)

Does anyone have any knowledge on "Corticosteroid-binding globulin deficiency"?

It's supposedly a rare genetic disorder which can cause #MyalgicEncephomyelitis #MECFS features.

And I just figured out that I have 2 mutations on the #SERPINA6 gene which codes for it. It's autosomal recessive which means my two parents had one mutation both and I could be symptomatic with the 2 mutations.

But before jumping into conclusions I'd like to talk to people who understand #Genetics #Endocrinology

@effies which watch model do you have? Such alerts don't work with my Garmin because it only happens during an 'activity'. Like, when there's enough movement involved and that is captured by the gyroscope. But I often go passed 100bpm doing nothing 😞

Made myself a present for Christmas: a 3Liter water reservoir with a drinking tube.
It should allow me to drink while laying down and not splash water everywhere πŸ˜… and it'll be easier for my boyfriend to prepare my electrolytes only once per day

#MECFS #MyalgicEncephalomyelitis

Hi there, I thought I'd start with a quick introduction as a new Mastodon member.

I'm Hoa, a 30something years old.
I live in the Netherlands and aim to come back live in France.

I'm a designer specialised in web design and development and love anything involving smart thinking and beautiful colours.

I'm chronically ill with #hEDS #endometriosis #adenomyosis and most recently diagnosed with #MECFS

This is this last illness which causes me the most issues at the moment.

Nice to meet you ❀️