This is my story about an acquired neurological condition which was estimated to affect around 1 in 3 million people when I received my diagnosis in 2016. Now, current estimates suggest it could be much more prevalent and affect around 1 in 2000 people, which makes it a borderline rare disease in the United Kingdom.
I have suffered two traumatic brain injuries (TBI’s) in my life. The first was in 2002, when I sustained a serious TBI after being assaulted. The second was during my penultimate university summer holidays in 2008; after cycling into a wall at the end of a sloping decline and falling 20 feet...
On March 15th, 2016, I was involved in a single vehicle motorcycle crash. Both my brain and body went through severe trauma. I was wearing full protective gear but was massively concussed with a right-side brain bleed, a sub-dermal hematoma, and a crushed left orbital.
Ten years ago, I experienced weird symptoms where my hearing went funny; I could hear noise but couldn’t decipher the sound. My GP sent me for a scan and they diagnosed a cavernoma (a cluster of abnormal blood vessels) which had bled. My balance became very bad and I couldn’t stand if I closed my eyes...
My name is Grace and I am 32 years old. In 2020, I was 28 and living and teaching in Rarotonga with my partner, Theo. In April, I was feeling unwell and having some strange symptoms...
I was 27 years old when I was in a tragic car accident which nearly claimed my life. I am now 54. I remember seeing a p-plater in the rear window of a yellow station wagon. I had been t-boned in my right door jamb pillar. The p-plater had lost control from the other side of the road by colliding in a 360-degree spin.
I was an intensive care specialist and a cyclist. Now I am neither. I hit a lamppost at 65 kmh.
In August 2023 I had a bad case of the flu, which ended in a terrifying migraine that lasted six days. The auras were so intense that I couldn’t lie down at night because of the pain. I explained to my local doctor that it was like trying to give birth with my head at night and was told to come back in three days if the migraine medications didn’t help. I did get better over the next days, thinking this is what life with migraines is.
The afternoon of July 16, 2018, I went to the gym to run and lift weights. This was a workout routine I had done hundreds of times over the past few years, and nothing seemed particularly different that day...
On December 6, 2022, I had a sudden ischemic stroke (where the blood supply to brain tissue is blocked by a blood clot). This caused paralysis of the right side of my body, partial paralysis of my right arm, and severe speech and cognitive impediments, such as difficulties with word finding and sentence construction...