Diagnosis - Alicia: My Battle with Wegener's Disease book excerpt

This is part two of a series of excerpts from my book Alicia: My Battle with Wegener's Disease. If you like what you read, please check out the book on Amazon. It's only just over £6, under $10 in the US.

Life’s under no obligation to give us what we expect.
— Margaret Mitchell, Journalist and Writer

It was over six weeks since her symptoms had begun. Alicia had lost a lot of weight because she wasn’t eating properly. She was constantly exhausted because she wasn’t sleeping. She had been off sick from work the whole time. She was still suffering from horrendous headaches, her nose wouldn’t stop running and her eye was swollen up. 

Alicia began to add earache to her list of symptoms, again on her left side. The headaches began to spread, now beginning to affect the top and left side of her head.

Throughout this period Alicia had had a persistent cough which had ever so slowly gotten worse and worse over time. It was a dry, tickly, irritating cough and initially she put it down to a common cold but eventually she realised it was another symptom. 

Despite her symptoms Alicia had left hospital. There was nothing more they could do for her, they had exhausted all of their tests. Alicia wanted to be at home in familiar surroundings.

Alicia was so low and desperate to know what was wrong with her. 

Dr Kaura had the answer. 

Alicia: My Battle with Wegener's Disease - Diagnosis

Alicia: My Battle with Wegener's Disease - Diagnosis

Alicia was sitting on the floor of her flat when the call came. Her parents were there with her at her flat in Kenton when Alicia’s GP, rang with the test results. He said ‘We think that it’s Wegener’s Granulomatosis.’ ‘What?’ said Stephen. ‘Give me a minute.’ Stephen scrabbled around for a pen and piece of paper. He could only find the back of a brown envelope to write on. ‘Can you spell that?’ Dr Kaura spelled out W-E-G-E-N-E-R-S G-R-A-N-U-L-O-M-A-T-O-S-I-S. 

‘Right, what’s that?’ asked Stephen. ‘We’re not exactly sure,’ said Dr Kaura. ‘We have never seen it before. Alicia needs to go and see the consultant at the Freeman Hospital urgently.’

When her dad put the phone down Alicia immediately entered the term Wegener’s Granulomatosis into her search engine on her computer. There weren’t many hits, but the first site she checked had a list of typical symptoms which matched her own. 

Later that day Alicia’s parents did their own internet search and were horrified to find that most sites reported that most Wegener’s sufferers died from the disease.

Alicia had known that she was ill, but she hadn’t realised just how ill she really was. 

If you enjoyed this extract, you can read more over at Amazon.