Tags » Rare Disease

The Faithful Friend

What is a faithful friend? Who have they been in your life? Join me over at Global Genes where I’m sharing about one of my faithful friends.

The Faithful Friend



When I am thinking about what I can write for other people to read, I often have a fearful realisation.  I realise that much of what I have written, recorded and scratched into journals over these last 16 years in particular is very personal, quite full of physical pain and holds many many questions about what life is about.  1,283 more words


A Day in the Life of a Rare Disease Patient: Empowerment

“Everything I know about my condition is due to my own research on the internet. I am unaware how much of this is correct or what I’m missing.” – Patient, Morquio syndrome.

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Rare Disease

Rising to the Occasion

I had a bed delivered today and faced that awkward moment again:

I answered the door in my power chair & escorted the men down the hallway, showing them which bedroom to put the new frame, box spring and mattress in. 454 more words


Letter To My Chronic Illness

Dear IH,

I need to break things off with you. While I realize that we’ve been together now for 8 years, I’m feeling like the time has come for us to call things off and go our separate ways. 436 more words

On funerals, dreams, and life

I just got home from a funeral.  A friend of mine died suddenly, way too soon.  He was a young father and it is just such a tragic loss.  413 more words


Get involved! Rare Disease Day!!

Rare Disease Day®: February 29th, 2016

Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.  164 more words