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Nicki's Story

Nicki's Story

Today is #reds4veds day, and this is why awareness works...
You have a friend of a friend of a friend who's an A&E Dr. She sees your #reds4veds status, is intrigued to find out more, and looks up Vascular Ehlers Danlos Syndrome. She is now informed. 

She discovers that it's not what she thought. Sufferers aren't just "a bit bendy" but actually at high risk of death from internal bleeding caused by spontaneous arterial dissection or organ rupture. 

Later in the year, someone with vEDS goes to A&E with abdominal pain. She no longer thinks vEDS just means people are "a bit bendy" and orders an urgent CT scan. It picks up internal bleeding and they operate in time to save their life.

Earlier in the year, before the Dr saw your status, they may have just "watchfully waited" with catastrophic results.

I lay in A&E for 10hrs while 2 of my coronary arteries dissected and I had a heart attack before they even considered there might be a major problem with my heart... I finally had a scan 20hrs after arriving at A&E. 

I've been lucky to have been taken seriously since then, with excellent care but not everyone is. Even with a known diagnosis and emergency plan.

Awareness saves lives.
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