Meningitis in your words

Susan Edwards's story

  • Location: USA
  • Categories: Fungal
  • Age: Adult 25-59
  • Outcome: Recovery with after effects
  • After effects: Headaches
Susan Edwards

I'm a victim/ survivor of fungal meningitis.

I received 8 injection in my lower back on July 17, 2012 a day I will never forget. After getting them I was feeling like I was coming down with the flu but never did. I was in and out of the ER and doctor's office. I couldn't do anything during the day the bright light was too much, noise gave me bad, bad headaches.

I called the doctor's office where I received the 8 injection. My Doctor said not to worry it happens sometime.

Then came Oct 3, 2012 I turned on the ABC nightly news and there it was, an outbreak of fungal meningitis,  if you had injections for pain in your back call your doctor or Health Department . That was the longest night of my life, seconds were hours.

I called my doctor he said I had nothing to worry about. So I called health departments. They said to go to the ER. I did.

"One hour later I got the phone call that changed my life forever"

I was by myself at home waiting for the results from the spinal tap. One hour later I got the phone call that changed my life forever .I was positive for fungal meningitis and I need to get back to the hospital ASAP. I did.

They started me on the Anti-fungal and that's the last thing I remember. I was in the hospital for 19 days, my kidney stopped and the doctor's told my family they were not sure if I would make it.

I lost a whole year of my life I don't remembered. In that year I was made a grandma and my daddy died of cancer. I'm in pain every day.

I can't have my back surgery because the CDC says the fungal is still in our blood stream. No doctor will see me or talk to me about it.

All of this happened because on man who owned a compounding company got greedy. He only got 8 years in jail and I got a life sentence of pain...But I'm happy to be alive.

Susan Edwards
October 2019

Detailed information about the after effects of meningitis

Many of the after effects of meningitis aren't immediately obvious. In this blog, Support Manager Cat explains how we can help.
Stories that inspire us to create a world free from the diseases.

Whether you are living with the after effects of the diseases or coping with the death of a loved one, we are here for you.

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They listen to the issues faced by someone struggling with the impact of meningitis, and provide detailed information and support.
Membership and support

The MRF Membership and Support team are here for you for any questions you might have about meningitis and septicaemia and their effects on you, or your family and friends.

Tel: Helpline UK 080 8800 3344 Ireland 1800 41 33 44