Alicia - My Battle with Wegener's

[Barry Forshaw]

Hello everyone
I haven't posted on this forum as much as I would have liked to over the past 6 months. The reason for that is that I've been busy writing a book all about my wife Alicia's battle with Wegener's Granulomatosis.

The book is now up available on the Amazon store (link to the UK version (http://www.amazon.co.uk/Alicia-My-Battle-Wegeners-Disease- ebook/dp/B00KAAL1AS/ref=sr_1_43?s=books&ie=UTF8& qid=1399979761&sr=1-43&keywords=wegener%27s)) (http://www.amazon.co.uk/Alicia-My-Battle-Wegeners-Disease-ebook/dp/B00KAAL1AS/ref=sr_1_43?s=books&ie=UTF8&qid=1399979761&sr=1-43&keywords=wegener%27s)). It's $9.99 in the US, around £6 in the UK and is 60,000 words longs - about 350 pages on a Kindle.

Heres the cover:


http://static.squarespace.com/static/53455e12e4b069248c98224b/t/5370dfffe4b090c1388d645d/1399906304346/Alicia:%20My%20Battle%20with%20Wegener's%20Disease ?format=500w


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. Alicia was previously healthy until she was diagnosed with Wegener's in 2005 and has been fighting the disease since then. 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.


I have also put together a website to support the book at www.wegenersdisease.co.uk (http://www.wegenersdisease.co.uk/)


I hope that you will check out the book and let people know that it exists!


If you have any questions please leave a post and I would be happy to answer them.

[mishb]

Great job Barry, I will definitely check it out.

I always seem to have a problem getting Amazon to send things to Australia but my daughter manages to do it some way.

The website looks awesome and if you don't mind, I would love to share it with our WG/GPA Australia group

[Barry Forshaw]

Thanks mishb!

The book is only available as an e-book for Kindle at the moment - there's no print book. No worries about it being delivered than, as it's all electronic.

I'd love it if you'd share the website, that would be great!

[mishb]

Well that's easier Barry. Kindle is my friend :thumbsup:

[annekat]

Excellent, Barry! You have done a great job and furthered the awareness of our disease. Congratulations! Best to Alicia. :smile1:

[Lilly]

Wow Barry, what a beautiful thing to do! I have often thought of writing a book about my experience, since we all experience it differently. But I just never know where to start! I think its fantastic that you did it! Congratulations! I am going to look at your website too. I hope your wife is doing well, and send her, and you, my thoughts, and prayers,,,,,,I hope she is in remission, and if not, then she is doing well.

[Barry Forshaw]

I don't want to give away the ending of the book but...

Alicia is doing well, has been in remission now for several years after two major flares. The biggest miracle was that we now have a healthy baby daughter and it's her birthday in June!

I'd encourage everyone to write their experiences down. It can be hard revisiting the past but it's amazing to look back at your journey.

[annekat]

I'm so glad to hear everything has worked out so well! I hope and pray it stays that way. Happy Birthday to your daughter!

[Alysia]

Hi Barry,
congrat for the book ! sounds amazing. you can also tell about it on facebook groups.
and congrat for your baby. I remember your story.
there were couple of women here who were asking about pregnancy, so maybe, if and when you will be able, can you write a thread about it, to help others ?

[Barry Forshaw]

That's a great idea Alysia. I may have commented on other people's threads regarding pregnancy but I never considered starting one.

Thanks for the birthday wishes annekat. Here's a pic of Audrey from a couple of months ago:

http://static.squarespace.com/static/52cc2d61e4b09f0e7248007e/t/5333f946e4b0e9a24bd7ec1e/1395915089450/Audrey?format=750w

[annekat]

She is beautiful!

[pberggren1]

Congratulations Barry!!!! I can't wait to read the book. I have read a few books by Weggies and their battles but none from a husbands perspective.

[LisaT]

I'm glad to hear your wife is doing well, and your daughter is beautiful. I will definitely get the book and maybe I can even get my husband to read it too...

[mishb]

Audrey is such a cutie and I certainly like her t-shirt as well :thumbsup:

[Alysia]

Audrey is so beautiful :hug3:

[Barry Forshaw]

Audrey gets her looks from her mother! :tongue1:

Thanks for your comment Phil. I hope you are keeping well. As well as interviewing Alicia about a million times for the book I also talked to her parents and her sister. I wanted to convey how it felt for the whole family, not just for Alicia. In any case, when Alicia was at her worst she was so drugged up on painkillers there are whole chunks of time missing so she wasn't the best person to tell her story.

I've contacted the local press here in Newcastle today and I'm hoping they'll pick up on it. It would be great to be in a newspaper talking about Wegener's to the general public.

[Lisa B]

I have just read your book in two days. I too am from the North East of England. I couldn't put it down. My mother suffered with Wegeners for 6 years. It was her lungs and kidneys that were affected. It was interesting to know the other parts of the body that can be affected and I was surprised at the amount of pain that Alicia was in. Another side to this disease I never knew about. My mother had lots of complications but never really suffered with any pain.

Keep up the good work.

[me2]

Looks fantastic. I've just downloaded it and look forward to reading it.