Rare Disease Day 2021 Today I’m joining with millions of people around the world in raising awareness for Rare Disease Day and #showyourrare. Last year I was diagnosed with Hypermobile Ehlers Danlos Syndrome also known as HEDS, a genetic, lifelong degenerative illness. That affects the collagen all throughout my body, causing issues with every system. …
Tag: advocacy
Draling With Medical Resentment
Its hard not to feel angry when symptoms are ignored by medical professionals or recomended treatments create new problems and or take away more quality of life. If you don’t follow their treatment your seen as uncompliant. You need psychiatry to get over your “fear” of said treatment. But no one says anything when it …
A Letter To My Younger Self | EDS Awareness Month
To my younger self, I just want to start off saying I’m sorry, I’m sorry for everything that’s happening to you, I’m sorry that for a long time no one but your mum will believe you, when you say something is wrong. And I’m sorry for hating you for so long, It was not you …
How She Is The Universe Became A Part Of My World
You know those people that come into your life and completely turn it upside down but in the best possible way? That’s what it was like meeting Laura Pena, a very talented film maker , speaker and the founder of She Is The Universe. An incredible docu series that’s led Laura to travel around the …
Why The Treatment Of Chronically Ill & Rare Disease Patients NEEDS To Change
Disclaimer – this post is not intended to bash doctors or the medical system, merely to bring to light the treatment millions around the world face on a daily basis. In honour of Rare Disease Day I wanted to cover a topic most aren’t often aware is an issue. That being the treatment of chronically …
Getting A Diagnosis After 9 Years ~ EDS
I still can’t believe I finally get to share this, I had honestly given up all hope that I would ever get a diagnosis. But on the 21st of January 2020 at 11:00am I received my diagnosis! I have Hypermobile Ehlers Danlos Syndrome, a genetic connective tissue disorder that effects every system of my body …
My Biggest Fear Is My Broken Body
The irony of this post is unreal, I wrote it a few days before halloween with the purpose of going up on Halloween night with a makeup look that to me showed how I’ve been feeling on the inside – broken. But that never happened as at 2am on halloween morning I ended up in …
How To Be A Good & Inclusive Role Model Online
Being a good and inclusive role model in any situation is incredibly important and especially online. We live in a world where online people can be “cancelled”, bullied and discriminated against without even a second thought. But social media can also be an amazing and impactful space if used correctly and responsibly. As a blogger …
The Reality Of Living With A Chronic Illness
Before I got sick I didn’t even know what a Chronic Illness was. Over 2 years later and I now know more about Chronic Illness than I ever thought I would. Over 2 years later I’m still fighting to get answers to what is wrong with me. Over 2 years later and I’m still fighting …
Taking My Advocacy To The Next Level Ft InvisiYouth Charity
I am so so excited to announce that I am a Global Brand Leader for an amazing charity called InvisiYouth. InvisiYouth is a nonprofit organization founded by Dominique Viel, that helps teens and young adults around the world with various chronic illnesses and disabilities gain the right lifestyle programs empowerment tools and fun events to …