Black Friday Book Sale!

For the first time ever I am running a Black Friday sale on my book Alicia: My Battle with Wegener's Disease.

It normally retails for £4.99 in the UK and around $7.49 in the US, but from today until Tuesday 28th November 2017 I have slashed the price below half price to £1.99 in the UK and $2.99 in the US. 

You can buy the book for Kindle, via Amazon here:

Amazon UK

Amazon US

Make the most of this sale - I'm not sure if or when I'll ever have another!

If you know anyone with vasculitis or an auto-immune disease and they would like to read an amazing true life story please let them know about this offer.

"I was diagnosed with Wegener's around 6 weeks ago and whilst still being in 'rabbbit in headlights mode', was after a book to help me understand the condition better. Although mine has been focused on the kidney and lungs, the amount of detail has really helped me get a proper feel on what the disease is and what can happen. Really liked the format of scientifically describing symptoms and treatments in depth and then how these related to Alicia in particular. Found the book very difficult to put down and would recommend to anyone who suffers from Wegener's or to anyone with a relative/friend wishing to know more."  -  AJ Boyd


Follow your nose to discover the cause of Wegener's Disease

I read a really interesting article on Med Page Today that theorised that the nose holds the clues to the cause of vasculitis (including Wegener's Granulomatosis).  

Could the cause of Wegener's Granulomatosis be found in the nose?

It starts off with a lot of technical jargon but don't let that put you off; the practical implications of that science are explained later in the article. I'll summarise things here too, to make it even easier.

The research was undertaken by Peter C. Grayson, MD, head of the Vasculitis Translational Research Program, National Institute of Arthritis and Musculoskeletal and Skin Diseases, NIH, in Bethesda, Md.

For many people suffering with Wegener's Disease, the first symptoms are experienced in their nose, with nosebleeds and sinus infections very common. This is one of the reasons it can be so difficult to diagnose GPA (granulomatosis with Polyangiitis), because doctor's are treating what they think is a sinus infection rather than the real cause of the problem. Many sufferers then go on to have worse symptoms such as crusting, bleeding and even the destruction of cartilage and bone.

Examining the genes of people with vasculitis to look for a cause is not a new idea, but what Grayson did was new. Instead of taking gene samples from the sufferer's blood, he took the samples from the original source - the nose.

"Increased SERPINA1 expression in nasal mucosa of patients with GPA raises the possibility of a protease-antiprotease imbalance in the nasal environment that could play a causal role in the development of GPA," Grayson and colleagues wrote.

"The study has given us a really nice list of candidate genes and ideas and pathways to pursue in future experiments," Grayson said.

Peter C. Grayson, MD

Peter C. Grayson, MD

"The observation that some of the genes we detected were related to the innate immune system suggested that there may be interactions going on between the nasal microbiome and immune cells within the nose. That's a really attractive idea for us to follow," he said in an interview.

They also plan to examine gene expression in deeper nasal tissue biopsy samples.

While this is a really interesting development, it is clear that this is not going to lead to an imminent major breakthrough. For one thing the study was very small and that could cloud the results which could be linked to rhinitis, sarcoidosis and other diseases. However, it is good to know that research is continuing into vasculitis and gives me hope that one day the cause, and ultimately a cure, may be found.

The article is called The Nose Holds the Clues in Vasculitis and you can read it here.

Image from M&R Glasgow under Creative Commons licence.

Weight Loss and Exercise whilst living with Wegener's Disease

We're very fortunate here in the UK to have a free universal healthcare system - the National Health Service. Although the NHS is under terrible financial and political pressure at the moment, it provides terrific help and resources for millions of people every year and most of the advice they provide can be trusted.

While Alicia had some issues with her initial care and diagnosis of Wegener's Disease, once she had the right team in place she was looked after well, and now has a great relationship with her consultants. Alicia has been in remission for many years now and we have a two year old daughter, Audrey, who is happy and healthy, in part because we have world class maternity ward on our doorstep - the Royal Victoria Infirmary.

I had back surgery on the NHS last year which was successful, and in the past few months I have been gradually increasing my exercise regime to get back to full fitness. I was never a great runner but I started getting into it before my operation and I was keen to return to it once I was fit enough. One of the resources I found really useful was The NHS Couch to 5k website. It gave me a structured training plan that I knew would steadily build up my strength and endurance without injuring myself.

I am now regularly running 5k and I am now looking to improve my times and distance.

While many people who suffer from Wegener's Disease simply aren't capable of running 5k, although some people can climb Mount Everest, looking after your health is vital for everybody. That's why I thought it would be useful to my readers to link to the NHS 12 week weight loss plan.

The plan is designed to help you lose weight at a safe rate of 0.5kg to 1kg (1lb to 2lb) each week by sticking to a daily calorie allowance. The guide is delivered through 12 weekly information packs full of diet, healthy eating and physical activity advice, including weekly challenges.

The plan was developed together with the Association of UK Dieticians

This is a great resource with lots of supporting material such as calorie checkers, meal plans, and exercise regimes. Of course, you should only undertake exercise after following advice from your own physician, especially if you have an underlying medical condition such as GPA. And we all know what heavy doses of steroids can do to our bodies!

However, the NHS 12 week weight loss plan is underpinned by a solid, evidence based medical background, so if you would like to move more and eat less, why not check it out? 

Photograph from Whologwhy, published under Creative Commons.

How does your Wegener's Disease define you and what you can do?

Do you accept your disability?

I read an interesting article on the BBC today. It's all about Melanie Reid, a Times journalist who doesn't accept her disability. She was paralysed in a horse riding accident five years ago. The accident left her with drastically reduced movement in her limbs, but despite this, she lives in a remote part of Scotland and her home remains free of adaptations for her disability. Melanie thinks that by adapting her home she would be signalling an acceptance of her disability.

Melanie Reid Disabled Times Journalist

I think that this is an interesting point of view and that's why I wanted to link to the article, even though it is not directly linked to Wegener's Granulomatosis. People who have Wegener's and other forms of Vasculitis often become disabled as their ability to walk is reduced, their eyesight may be compromised, and their lungs fail.

Most traditional ways of coping with disability start with having the sufferer accept that they are now disabled and adapting their goals and life to their new limitations. The danger in not accepting your new condition is that you will have unrealistic ambitions which in the long term will cause you to be unhappy.

Fight your limitations

Melanie is choosing a different path. Her view is that by making that acceptance she is already defeated. She has fought incredibly hard over a long period of time to walk a few steps, and as a result some of her disabled readers felt betrayed that they aren't trying hard enough. Melanie openly admits that she hates being 'stuck in disability' and would far rather be able bodied. Again this has angered some disabled people who have come to accept their limitations and have found that it has actually helped their lives in some ways. They wouldn't be the same people they are today if they were not disabled.

As ever, I think that the truth, and the best way forward lies somewhere between these two extremes. On the one hand it is great have the will to fight your limitations and to not view yourself as inferior to an able bodied person, but on the other hand you also have to be somewhat realistic in your ambitions, especially if you can make a few small adaptations in your life to make it easier for you and those around you.

What do you think?

How does your Wegener's Disease define you and what you can do? Are you stronger by fighting the limitations of your disease or by accepting that your life will no longer be the same? Is refusing your disability just a step on the way to rebuilding your life?

If you have any thoughts, please share them in the comments.