Ann, 71, from Cambridgeshire – diagnosed with Cadasil in 2017
“It is very hard to distinguish between the symptoms of old age and the consequences of the disease.”
In my early 50s I started to suffer various symptoms, including numerous TIAs, so it was a long time before I was diagnosed.
The majority of TIAs were very short-lived and the doctors suggested that I might even have them in my sleep and so be unaware of them.
At that time, the doctors declared that I did not have the gene they were looking for, but when a full DNA sequence was taken through the Human Genome Project last year (2017), it was positive.
Within the last three years I have been admitted to hospital with three separate cerebral episodes, one a definite stroke, the others marked by symptoms of confusion and disorientation.
When I was first diagnosed, it was good to have an explanation for the TIAs, but I felt things would only get worse.
My deteriorating health, rather than the diagnosis itself, has limited my life in various ways. I have suffered from increasing fatigue and anxiety, a massive inner ear infection and gait problems.
I cannot walk the distances I should like to walk; I cannot do long distance travel; my life is limited by fatigue and fear that challenges may be beyond me.
Many health care providers have not heard of the disease, and when they have their knowledge is very limited.
So my main support has come from my husband and friends who know of my condition, they are very considerate.
I regard living with Cadasil as a thorough nuisance. It is very hard to distinguish between the symptoms of old age and the consequences of the disease. Many older people say it’s no fun growing old.