Me in a snapshot

I am frequently asked how so much has happened to one person, and when it all happened! I thought it might be easier to give a quick snapshot with a timeline. I have hyperlinked where there is a corresponding blog entry, if you are so inclined. 0-16 1993-2009: HAPPY AS LARRY. Besides childhood asthma, honestly […]

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A TRIBUTE TO A BEAUTIFUL GIRL

Dear world.  It’s Morgan’s mum and dad here.  If you have been following her on Instagram http://www.instagram.com/dontmswithmorgs/ you will be aware that despite her selfless courage over these past few years fighting multiple sclerosis and CTLA4 deficiency, she succumbed to melanoma cancer in October 2018.   She was just

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When nothing goes to plan

So where was I the last time I blogged? Had just had a modified radical neck dissection and was waiting on pathology results Was planning for an allogeneic haematopoietic stem cell transplant And what was the outcome of these? Modified radical neck dissection: unsuccessful Allogeneic haematopoietic stem cell transplant: didn’t happen Sigh. After I woke […]

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Metastatic Melanoma / Stem Cell Transplant

Melanoma You know how I said 2018 would be my year? Ha ha ha. If you’re reading this you probably already know that the melanoma I was diagnosed with on my left ear last year has metastasized (fancy word for when the cancer spreads beyond the original site). A couple of days into January I […]

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Genetic testing results – the best possible ending to my year!

There aren’t enough superlatives to describe how happy I am that this year is nearly over. It started in March with an excruciating flare of my lymphocytic enterocolitis, and rolled into April with laser surgery on my dysplasia. A couple of days later I ended up in the ICU with hypokalaemic paralysis (which led to […]

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Gilenya (fingolimod)

A disclaimer – I realise that this series of posts on medication are quite negative. In no way, shape or form am I advocating to pursue life post-diagnosis without treatment unless that is advised by a neurologist. Since beginning this series on MS DMDs, I have been diagnosed with Common Variable Immune Deficiency which we […]

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