Just what is this ‘TGA’ diagnosis that so few know about? Odds are good that many readers of this article have not heard of this… Continue reading We Beg to Differ
Results for "light up for rare"
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Annie developed Leber hereditary optic neuropathy (LHON) at an adult age, when she was 44 years old. LHON affects fewer than 1 in 15 000… Continue reading Meet Annie
On the night of September 9th 2016, I honestly felt as if I had a stomach virus or had eaten some type of bad food product.… Continue reading KEEP ON FOLLOWING YOUR TOES
I am Canadian born of Irish immigrant parents so the first rare disease your mind might jump to is Hereditary Hemochromatosis and your assumption would… Continue reading I Am Not Alone
Guest Article: Alternating Hemiplegia of Childhood For Rare Disease Day (28-Feb-2017), I have invited a family friend to write about her experiences of AHC, a… Continue reading Our journey
My 20 month old daughter Clara, who is the light of our world, was recently diagnosed with Progressive Myoclonic Epilepsy 6- a recessively inherited genetic… Continue reading 1 of 13…
Hi, my name is Crissan and I want to raise awareness for a metabolic condition called Trimethylaminuria. It all started after my 18th birthday. I… Continue reading Raising awareness and compassion for Trimethylaminuria (TMAU)
I am Len Strickland and I was diagnosed with Hereditary Amyloidosis (ATTR) with a variant of Val122ile. There are over 100 different variants of ATTR… Continue reading My experience with hATTR
I never knew life without pain. It was my normal and it was the normal of all my adult family members. Growing up, I accepted… Continue reading I Am A Medical Enigma