Community, Sick notes and Prototype testing

‍

Many exciting things have happened over the past month, but there are also some important topics you should be informed about.

‍

This month you can read about:

• 🩺 The status of endometriosis diagnosis in Germany.
• 🥴 Why the new sick-note proposal is bad news for chronic illness patients, and how you can help stop it.
• 🪩 Insights from our first community event.
• 📱Help us create the endometriosis companion app of your dreams.

Endo news

As lonely as it might feel sometimes, the truth is that there's around two million (2 000 000!) women in Germany affected by endometriosis . So why does it seem like there aren't many others around us who can understand? And why is there so little medical support and guidance?

• It can take 8-10 years on average to get diagnosed with endometriosis in Germany. Despite the overall prevalence, the percentage of the population with a documented diagnosis is 0.95% (vs. 8-15% who actually suffer from it). It doesn't help that the golden standard for endometriosis diagnosis in Germany is still laparoscopic surgery. By contrast, the UK's NHS recently gave the green light for two non-invasive diagnostic tests for endometriosis 🧪. More here.
• If this coalition committee decision is approved, and we're required to get a sick-leave note 🏥 in person from day one of feeling sick, how exactly are we supposed to crawl out of bed (or off the couch) to sit in a waiting room for hours? For a lot of us, suffering from chronic conditions, that's simply not realistic. Over 200,000 people have already signed EndEndoSilence e.V.'s petition to stop this. Sign the petition here.
• To finish on a more positive note, endometriosis does seem to be making its way to the EU's policy agenda. The Irish EU (Council) presidency is organising a conference on December 3rd to promote collaboration amongst EU member states 🇪🇺 to advance endometriosis care. More here.

‍

Medical gaslighting

On one of our latest post, we describe some of the tell-tale signs of medical gaslighting. Do you recognise any of these?

• Your symptoms are not that bad.
  
• You don't need more tests. Everything looks good
• You are too stressed, you just need to relax.

‍

Our July community event

Last week, on July 14th, we hosted Calala's first in-person community event for women with endometriosis.

‍

The atmosphere was even better than what we could have imagined. An evening full of genuine connection and generous exchange of experiences to help each other out. Thank you to everyone who joined!

‍

What we learned? Here's a few tidbits:

• No matter for how long you've been diagnosed and how deep your research 👩🏼‍🏫 , there's always new things to learn from others.
• There isn't a one-size fits all solution. For some, being on hormonal treatment has been a life-changer (Dienogest/Zafrilla, etc.💊 ), whereas for others the side-effects are not worth it (depression, anyone? ⛈️ ). Diet can really help some 🥗, while make no difference whatsoever to others. What seems to bring a bit of relief? Strength training 🏋🏻‍♀️ and location-specific massages and exercises!
• There was a shared feeling that getting a diagnosis is only the beginning of a journey without a map 🗺️, or a compass 🧭. The lack of qualified guides (i.e. doctors) is truly desperate. If anyone has good doctor recommendations, please share! We'll start a directory 📒.

We have a couple of new events already in the works, you'll hear about them soon! And keep an eye out for the WhatsApp community launch within the next few weeks.

‍

‍

Not around? Don't worry. There will be other chances. In the meantime, please help us spread the word.

If there's anything at all you'd like to share or let us know, please don't hesitate, we'll be very happy to read you!

‍

You shape what we build.

With love from Berlin,

Your Calala team 🫶🏼