We know our own body better than anyone!

The story of Dana

I’m 39 years old and was diagnosed with EDS only when I was 35. It’s not that I didn’t have symptoms… I had many but doctors didn’t connect the dots as my symptoms referred to different body systems.
About 12 years ago I started getting the worse headaches I’ve ever had, they would start in the morning as I work up and continue with me throughout the day.
Again, no doctor figured out the cause.

I decided I need to find some answers and began researching.
When I told one of the doctors I was treated with at the time that I think I might have a rare syndrome, he answered that this would be possible only if I’d have EDS – which, he continued, I don’t have as it is a rare syndrome.

I immediately began reading and learning about EDS and found myself in every symptom.
The next step was to look for a doctor who can confirm if I have or not EDS.

I was officially diagnosed with EDS and from this moment on I treat myself suitably and see improvements in my health.

But I still had to resolve the headaches.
Once again, listening to my own body I kept going until I got a correct diagnosis.

Having EDS made it hard for the doctors to see that I was suffering from Idiopathic intracranial hypertension.

Now I’m recovering from a shunt surgery, and the headaches are getting better! After 12 years of daily suffering!

Nobody knows our own body better than ourselves <3