Kerri's Story

“Don’t google it Kerri” 4th May 2016 will be etched in my memory forever. I was painting the fence in the garden having finished work for the day. I’d only returned to work for two weeks on a part time basis after having 8 months off following a stroke and a diagnosis of a pulmonary arterial aneurysm.

 

The weather was beautiful, and I felt frustrated that I hadn’t got a diagnosis yet to explain my symptoms. The phone rang it was Prof Newman from St Mary’s genetics clinic in Manchester. I’d pestered him to give me my results as they’d taken a few days short of 6 months to generate. Today was the day he could share them. His first words were, we know what’s wrong with you I’m sorry it’s taken so long but Once I tell you, I don’t want you to Google it!!!

 

"I asked him to say the name of the condition in full as I needed to hear the words vascular Ehlers Danlos syndrome

Kerri Your results show that you have a change in two of your genes. One is the Col3a1 gene and the other is of an unknown significance. Both of these genes are responsible for making collagen. I asked him to say the name of the condition in full as I needed to hear the words vascular Ehlers Danlos syndrome.


It was then right then that I knew. I’d been right all along, I’d already spent a good 8 months Googling the condition. Ticking the boxes of the symptoms. Thinking I’d spent my entire adult life questioning my weird health issues. Now I felt a mixture of relief, being scared, feeling bewildered and hopeless. Median age of death on google for this condition was 50yrs old.


I was 44 years old and this diagnosis had taken 2 months short of 2 years to get to. Little did I know this was the beginning of a turbulent 18 months of aneurysm ruptures and random collapse’.


I’m now 2 years on, 6 months free of emergency hospital admissions. In the last 6 months I’ve travelled far and wide. I don’t take life for granted anymore, I still sweat the small stuff which is something I need to address but mostly I’m positive and future focussed.

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