My Journey With Ehlers Danlos Syndrome

17/05/2026

Forever grateful for days like these ♡ watching our boy, my nephew, do what he loves.

Even of there were bumps, Connor showed who he was like a true sportsman. Warching him on and off the track is a true privilege. Proud to be his Aunt 💚

My sister whipped up an amazing lunch as always, miss cooking ♡ told me to shut up and get away ;) lol God I love her 😅

Family really is everything; the older you get the faster time flies, just as you want it to slow down a little.



..... sorry our nephew; ill share him now Kyle lol 😆

14/05/2026

Oh the spine....the latest conquest trying to take me down...

EDS = actually trying to hold yourself up & together.

No one knows anyone story. Life is simple. Live it. Don't judge. Be kind. And help each other when you can 🦓💜

13/05/2026

Slipping Rib Syndrome is no joke. Some of us have no control over it. Not a lot of docs look after it either.

EDS = more docs needed, more research, more funding

07/05/2026

These blue booties 💙 really do something for your ankles...maybe next year's Met Gala shoe of choice?

All cuddled up in a warm blanket ready for Bladder Surgery Day! My surgeon Dr Elzyad is beyond amazing. He has taught himself so much about hEDS and cEDS to properly help me and my specific case.

07/05/2026

So much more funding and research needed.

There is no cure. There is no fast diagnosis process. We need to do better. For our kids. For us who took years to be diagnosed. We just need to do better.

05/05/2026

It really is. Embrace it. Loudly. Genuinely. Even when it is so f%*king hard to believe it. Just get out there and do it.

One foot infront of the other

05/05/2026

At my second home, St Micheals Hospital in TO. seeing a trauma surgeon for my neck, and both shoulders.

My amazing doctor in Arizona who used to work here referred me since my case got too big for other surgeons. I'm lucky to have an amazing team here in TO.

Let's see what today brings....

🦓💜

02/05/2026

💜🦓

It’s not laziness.
It’s not lack of motivation.
It’s knowing your body might flip the script the second you move and stepping into the day anyway.
Carefully.
Cautiously.
Bravely.
That kind of strength doesn’t get talked about enough.

02/05/2026

Sometimes we are that in that moment and we look at someone and make all the assumptions. One thing I have learned is to not do that. We all have a story. You never know what someone is going through vs. what they are physically doing in that moment. Masking pain (physical pain) for me has been something I have mastered..."im ok ya.... im doing good!" .... "just keep swimming"

Its simple, be kind... like actually kind. Don’t let people walk all over you thats for sure, but this life is hard, taking a moment just to smile instead of judge, it costs nothing.

01/05/2026

🦓💜