MRKH - Beyond The Scroll

We live in a world where we’re constantly online and always within reach, yet so many of us still feel unseen, especially people navigating MRKH (Mayer-Rokitansky-Küster-Hauser syndrome) or any health condition where support is craved, the digital space can feel like a maze. It’s scattered, overwhelming, and rarely built with us in mind.

Support often starts with a quiet search or a hesitant step into a Facebook group. But social media, in its current form, isn’t designed for depth. It's noisy, performative and full of distractions. Of course there are so many beautiful things about it, but when there's billions of users and multiple groups, MRKH support on these platforms feels fragmented. A post here, a comment there, a message that gets lost in your inbox, an event missed, too many groups to check and keep up with. We end up relying on tools that were never made to hold our stories, to hold us!

Ellamae at "The Vagina Festival" in London after co-hosting the renowned femme health poetry event.

What people are really looking for

For younger especially generations who’ve grown up in a digital world, there’s a growing hunger for spaces that feel real. Not curated. Not clinical. Not buried in newsfeeds or websites. But intentional, human, and designed with care. And for any generation, an easy to use mobile app to find someone on a similar path to you, be it age, stage or location, is a no brainer.

So that's what we need. And that's what we deserve, so that's what we will build.

A place where we don’t have to explain ourselves. Somewhere MRKH is already understood, where we can show up fully with our joy, grief, questions, ideas, and humour.

A calmer, more private space. Not exposed to strangers or lost in the multitude of networks. Somewhere that feels safer to share what we’re really feeling, where we are in control of our MRKH feed and friendships, as well as the ability to have pride in our identity.

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Support that feels personal. Something that includes mental wellbeing, identity, creativity, body literacy and celebration of individuality not just the medical facts, somewhere we can learn and grow as people beyond our diagnosis.

Ways to meet others meaningfully. Whether it’s through shared experiences, creative expression, or community events, it’s about finding your people without having to scroll through noise or pluck up the courage to private message someone - we need meaningful ways to find one another and people that want to find us too.

Ways to become an advocate Anyone can be a community builder, you don't need a big following or to be public, you just need the desire to want to help others.

Why Tailored Support Matters

Living with MRKH can feel incredibly isolating, and generic platforms rarely make that better with privacy fear and profiles not tailored to MRKH. We're having to constantly share who we are when dropping a message in Whatsapp (because only you're mobile number pops up!) or posting on FB without anyone knowing really what stage of your journey you're on. There's never really a sense of identity behind some of the popular social media groups we all utilise for support.

Many of us have been bouncing between Facebook groups, WhatsApp chats, Instagram pages, and some remain inside websites. We're trying to piece together something that feels supportive whilst navigating multiple places at once with a diagnosis that has so many layers and needs- hormone tracking, sexual confidence, infertility - it's A LOT. We need a home for it all.

It’s time for something built with intention. Something that brings together everything in one place. Somewhere you can access trusted resources, express yourself, track how you’re feeling, and find others who just get it.

We want real experiences. We want spaces that see the full picture of who we are. MRKH support deserves a platform that reflects the depth, creativity, resilience, and diversity of the community.

We’re not asking for more noise. We’re asking for something that finally feels like ours. Somewhere we can all build, belong and bloom, individually and as a collective.