#RareDiseaseDay #CareForRare

Health is a crown that the healthy wear, but only the sick can see it.


I, amongst 350 million other people worldwide, are battling every day with rare diseases that are mostly unknown, uninvestigated and incurable. The worst part about living with a rare disease is the unknown. Nothing in your life can be certain because at anytime your life can come crashing down.


I am part of the lucky few who have survived.

I am a research participant in world pioneering studies that is attempting to save and better my quality of life and many others, but this research underfunded.

People with rare diseases often feel scared, isolated and frustrated knowing that no doctor can offer the answers or long term risks to the cause of all your debilitating medical symptoms that threaten your entire body and brain.

Invisible doesn’t mean non-existent.

A good day does not mean cured.

A long term fight for a family to find the right care may not ever be understood.

As medical zebras, we do the best we can to be strong enough to advocate for ourselves and millions of other patients to the government, doctors and public hoping that there will be one day a revolution in healthcare and research.

We too have dreams and aspirations but the lack of awareness, understanding and support makes it even more difficult to accomplish.

Living with a rare disease has taught me that medicine and science are profoundly human endeavours. Doctors, scientists and policy makers are not immune to the same biases that affect us all.

At the end of the day, we need to be willing to listen to patient stories and be willing to say, “I don’t know”.

“I don’t know” is a beautiful thing.

“I don’t know” is where discovery starts.

With research, possibilities are limitless.

Being unique brings hope that the true cause of my disease, and thousands of others, will be discovered and future generations will soon be cured.

#RareDisease #EhlersDanlosSyndrome #Dysautonomia #PoTS #MastCell #CCI #ChiariMalformation #TetheredCord #SpinaBifida #SpinalFusions #ICH #CVST #BrainClot #Stents #Pioneering #Neurosurgeries #PatientAdvocate #Recovery #HealthJourney #Mindfulness #Awareness #FindACure #Research