Sharon's Story

Sharon’s Story

Married with three grown children, Sharon was living a full life when a medical event turned her life upside down. Hospitalised and in a life-threatening situation she eventually recovered only to receive a diagnosis of Common Variable Immunodeficiency (CVID). Here is her story…

“In 2006, Sharon’s life changed for her and her family. After a holiday in New Zealand, she was loving working 5 days a week in a child-care centre in the “babies’ room”, paddling dragon boats on the weekend and knowing her first grandchild was on the way. Life was great except for the fact that for most of the year she had chronic sinus infections. In October, after over 12 months of continuous antibiotics, Sharon had surgery to try to put an end to the infections.Unfortunately, the infections continued after the surgery, and on the 6th of December, a day Sharon has no memory of, her husband took her to Ashford Emergency Department, drowsy and increasingly delirious.”

Emergency Department, drowsy and increasingly delirious. Doctors began blood tests and found that she had extremely low platelets. Her absolute count was 16,000 so she was given 4 units of platelets overnight in the High Dependency Unit. CT scans showed Sharon had 3 bleeds in her brain with no known cause ITP.

Sharons’s family were stunned to be told that she was in a life-threatening situation and Doctors were unsure what the next 48 hours would hold. After much discussion between a team of doctors, a bone marrow biopsy, MRI, CT scan and more blood work looking for more sinister causes (because she had a malignant melanoma in 2005 and suffered rheumatoid arthritis for over 20 years), there was nothing conclusive. On day 5 of being in hospital, with great relief to Sharon’s family, she remembered them all! The first memory she had from 6 days before was seeing the ultrasound her daughter in-law had brought to show her of their first granddaughter. Sharon had no idea of all the drama that had happened before. This experience has taught her that you do not have to be in a car accident to be in a life-threatening situation.

Sharon was home for Christmas and over the next 3 months she rebuilt her strength and fitness but never regained any memory of that week, and frustratingly, she still had sinus infections! After seeing too many doctors, professors and specialists and having many, many tests done, in April 2007 Sharon finally saw an immunologist. He did an allergy test which came back normal and then a vaccine response test that fortunately, Sharon failed! This led the doctor to diagnose her with CVID, Common Variable Immune Deficiency.

Despite the name, CVID is not very common at all, only 1 in 50,000 people have it and what it means is that Sharon has a hole in her immune system and can’t fight infections. It was also the answer to her bleeding in the brain – because of the constant sinus infections her adult platelets were dying and not being replaced which meant her blood thinned and then bled in her brain.

As a result of her body not being able to fight infections, Sharon has IVIG (intravenous immunoglobulin) therapy every 3 weeks. This allows her to benefit from everyone else’s antibodies through the invaluable donations of thousands of blood and plasma donors. Without the incredible generosity of these amazing donors, she would not be able to hold the hands of her grandchildren and enjoy the quality of life she has today. Sharon holds them close and cherishes every smile and moment with her family as she knows how close she came to not being the wife, mother, grandmother, sister and friend that she is.

Published: September 2020.

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