I've written a book about my wife Alicia's battle with Wegener's Granulomatosis. It's called Alicia: My Battle with Wegener's Disease, and it is on sale now!

Great insight into surviving, living with and managing this disease. The engaging story of an amazing young woman’s personal struggle, survival and life with Wegener’s Disease.
— Lesley Mayne - Amazon
Wegeners Disease Book Cover

I have tried to achieve three things with the book.

The first is to explain what the disease is, how it is diagnosed and how it can be treated.

The second is to raise awareness of this terrible disease, and autoimmune disease in general.

The third, and more importantly, I wanted to tell Alicia's story. I think it would be a great, inspiring read for anyone suffering with a chronic illness, but it will obviously be even more relevant to someone who has Wegener's, or someone who knows someone with Wegener's.

Alicia held her mam’s hand and wouldn’t let go.

Alicia was terrified. She was about to have her throat sliced open and a tube inserted to help her breathe. 

Christine was petrified too. Her mam, Audrey, had had a tracheostomy just like Alicia was about to. While Alicia had Wegener’s Granulomatosis, Audrey had suffered from heart problems. Audrey never recovered and died following her tracheostomy.

There was no alternative for Alicia. The drugs weren’t working. All the steroids, the ketamine, the morphine and even the chemotherapy drugs had failed. Alicia’s throat had shrunk to a quarter of it’s normal size. It could close completely at any time and she might die.

Even if Alicia survived she would have a big scar in her neck with a tube poking out of it. This wasn’t something that a twenty four year old girl should have to cope with. Her bright future was disappearing from view.

Alicia lost consciousness as the anaesthetic kicked in. Her mam had to prise her hand from her daughter’s as the doctors wheeled her away.

Amazon Kindle

The book is now up available on the Amazon store (link to the UK version). It's £4.99 in the UK, around $7.50 in the US, and is 60,000 words longs - about 350 pages on a Kindle.

Apple iBooks

In February 2015 I published the book in the Apple iBooks store in 51 countries. Here is the link: Apple iBooks store

If you would like any further information about the book, please contact me via my contact page.

The book is so illuminating, sympathetically and sensitively written. A real insight of one very brave and beautiful young lady.

I knew you suffered very badly but this book has made me realise just how badly you were effected.

Thank you Alicia for bearing all I’m pretty sure that many people all over the world will understand more about this deadly disease.
— Olga Corbiere - Facebook

 

Frequently Asked Questions

Is the book available in print?

No. At the moment the book is only available electronically via Kindle for Amazon and iBooks for Apple devices..

How do I get the book?

The book is available on the Amazon store worldwide. Here are a selection of countries where you can buy the book:

The book is available in 51 countries on the iBook store.

What format is the book in?

The book is formatted for the Amazon Kindle. You can download it directly to your device from the Amazon store using the links above.

Since February 2015 it is also available for Apple devices on the iBook store.

I don't have a Kindle. Does that mean I can't read the book?

You can still read the book. One of the reasons I chose to publish the book for Amazon Kindle first is so that it can reach as many people as possible. If you don't have a Kindle device you can still read the book on virtually any smartphone, tablet or computer using the free Kindle app.

You can download the free Kindle app here.

The devices you can get the Kindle app for include:

Apple

  • iPad
  • iPhone
  • Mac
  • iPod Touch

Android

  • Tablet
  • Phone

Windows Phone

  • Phone

Computer

  • Mac
  • Windows 8
  • Windows 7
  • Windows XP
  • Windows Vista

You can also use Kindle Cloud Reader to read the book in your browser.

As you can see, there is virtually no device where you cannot read the book!

Will you ever publish the book for Nook or any other digital format?

I am currently in the process of adapting the book to be published for the Nook. I am also considering producing a print version of the book through Createspace. 

If the book is successful and enough people ask for it in other formats I will certainly consider publishing it in other formats.

How much does the book cost?

Around £5 in the UK, $7 in the US, and $9 in Australia. 

This is a first class read for all those who suffer or know someone who has Wegener’s, it show how strong Alicia is and how this could help those to be strong and determined to live life to the full, tears of sadness and tears of joy, so well written amazing and inspiring.
— Amazon review