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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

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 ❀️