Tags » Rare Disease

wind, sails

I had this great plan going in to my GP appointment today. I knew what I wanted to talk about, what I wanted to ask for, etc. 692 more words


To the lady at Sweet Tomatoes

So lately, Michael has started this thing.  It’s between a scream and screech of joy and happiness but . . .  if you are too close it feels more like torture.  493 more words

Daily Prompt [Song]

At some point in my life I believe I carried a song in my heart.

It’s not there anymore. :(



Usually, when I write, I do so once I have already processed something. Even if it is a seemingly small step on the journey, I tend to wait to write until I have wrapped my mind around something, and come to terms with whatever it is. 1,130 more words

"Shit, I DO Have CADASIL" to "So, okay... I have CADASIL".

“Shit, I DO Have CADASIL”

As I’ve said in an earlier post, finding out I had CADASIL was no surprise. My Mum had been diagnosed several years earlier; her mother almost certainly had it, having had many strokes in her lifetime, with obvious deterioration in her physical and cognitive health over that time; and I had been having migraine with aura for too long already. 522 more words


Daily Prompt [Disrupt]

My diagnosis of Lhermitte-duclos Disease and then Cowden Syndrome disrupted my life so completely that even 7 years later I am still reeling.  Trying to find my balance and inner strength. 133 more words


When your body starts catching up with you

I’ve recently realised that I’m at a stage in my journey with rare disease that my body is catching up with me, and a lot of my problems are chronic and aftermaths of necessary surgeries and treatments to save my life. 802 more words

Rare Disease