Fishing as therapy for Wegener's Granulomatosis (GPA)

It's not often I read fishing websites for Wegener's Disease stories, but I saw a story on the Bassmaster website recently and I couldn't resist linking to it. Alicia's dad is a keen fisherman and Alicia has a fish tattoo, so the combination of fishing and Wegener's stuck in my mind.

David Cosner has been battling Wegener's Granulomatosis for 8 years, and his favourite form of therapy is catching a 5lb fish!

David was diagnosed at just 17 years old. He was a keen lacrosse player but when the disease attacked his lungs he couldn't cope with that sport physically so he switched his focus to bass fishing. He fishes competitively despite being prone to lung infections. He has undergone over 200 procedures to treat the GPA affecting his lungs, has had a large part of one lung removed and he has even fallen into a coma twice. At some point in the future David believes he will need a lung transplant.

To help pay towards his medical bills David has a Go Fund Me page here.

If you would like to read the full article go to the Bassmaster website here.

The link between Gluten Sensitivity, Auto-immune Diseases and the Leaky Gut

The Gut is not Like Las Vegas: What Happens in the Gut Does Not Stay in the Gut

I saw this Youtube video on the Vasculitis UK Facebook page (formerly the Stuart Strange Vasculitis Trust) and thought it was worth linking to via this blog. It's just over an hour long so make a cup of coffee before you begin watching it.

Here's a little bit of detail about what is covered in the video (don't let it put you off - the video is a lot easier to understand and even includes some jokes!).

The intestinal epithelium is the largest mucosal surface providing an interface between the external environment and the mammalian host. Its exquisite anatomical and functional arrangements and the finely-tuned coordination of digestive, absorptive, motility, neuroendocrine and immunological functions are testimonial of the complexity of the gastrointestinal system. Also pivotal is the regulation of molecular trafficking between the intestinal lumen and the submucosa via the paracellular space. Under physiological circumstances, this trafficking is safeguarded by the competency of intercellular tight junctions (TJ), structures whose physiological modulation is mediated, among others, by the TJ modulator zonulin. The structural and functional characteristics of intercellular TJ and the protean nature of the intestinal content suggest that the gut mucosa represent the “battlefield” where friends (i.e., nutrients and enteric microflora) and foes (i.e., pathogenic microorganisms and their toxins) need to be selectively recognized to reach an ideal balance between tolerance and immune response to non- self antigens. This balance is achieved by selective antigen trafficking through TJ and their sampling by the gut associated lymphoid tissue. If the tightly regulated trafficking of macromolecules is jeopardized, the excessive flow of non-self antigens in the intestinal submucosa can cause autoimmune disorders in genetically susceptible individuals.

This new paradigm subverts traditional theories underlying the development of autoimmunity, which are based on molecular mimicry and/or the bystander effect, and suggests that the autoimmune process can be arrested if the interplay between genes and environmental triggers is prevented by re-establishing intestinal barrier competency.

Science Based Medicine

Whenever I see something like this doing the rounds on Facebook I always check out the Science Based Medicine website to see if it is legitimate or not. Alessia Fasano was mentioned on this page - a balanced look at gluten sensitivity. Food sensitivities are a fertile ground for scammers, dodgy companies and conspiracy theories, most of whom have their own pet theory to promote, and/or want your cash for their 'miracle cure.' The page I have linked to outlines the issues surrounding gluten sensitivity and the current scientific understanding of it.

I'd urge everyone to be sceptical of things you read on Facebook and do a little bit of research before you believe and share them. Science Based Medicine is a great place to start your research.

More About Alessio Fasano

Alessio Fasano, M.D., founded the Center for Celiac Research in 1996 to offer state-of-the art research, clinical expertise and teaching for the diagnosis, treatment, and prevention of gluten- related disorders, including celiac disease, wheat allergy and gluten sensitivity. In 2003 members of Dr. Fasano’s research team established that celiac disease affects approximately 1 percent of the U.S. population, a significantly higher number than previously believed. Researchers from the Center also have recently identified molecular differences between celiac disease and gluten sensitivity, a newly defined condition on the spectrum of gluten-related disorders.

Dr Alessio Fasano

During research designed to develop a cholera vaccine, Dr. Fasano uncovered a toxin, zonula occludens, which causes diarrhea by loosening the tight junctions and allowing intestinal permeability. Subsequently, the Fasano lab identified the protein zonulin, which controls this process. Dr. Fasano’s research since established the role of zonulin in the pathogenesis of celiac disease and type 1 diabetes. Safety and efficacy testing of a zonulin inhibitor, Larazotide acetate, has been completed and plans are underway for Phase III clinical trials of the compound.

Dr. Fasano’s lab is currently investigating the composition and changes in the gastrointestinal microbiota to help determine why some individuals with an inherited predisposition to celiac disease develop clinical disease while others do not. His lab is also investigating the role of the timing of gluten introduction to infants in the development of celiac disease and working to uncover a biomarker and to develop a diagnostic tool for gluten sensitivity. In addition, the Center is pursuing possible links between gluten-related disorders and conditions such as schizophrenia and Autism Spectrum Disorder in certain subgroups of patients.

Thanks and an apology from Wegener's Disease

First the apology.

I haven't been blogging here anywhere near as much as I would like. In fact, this is my first blog since the end of March.

The main reason for this is that I work as a wedding photographer and we are now moving into wedding season. In the past 4 weeks I have photographed three weddings and an engagement shoot. If anyone is interested, you can take a look at my website here.  

And here is a photograph from a recent wedding.

Katy & Chris walking over the Millennium Bridge on Newcastle Quayside

Unfortunately I have been too busy to blog here and too busy to finish the edits on the print version of my book Alicia: My Battle with Wegener's Disease. I will be busy over the summer, but I hope to get back into the swing of things once the wedding season finishes around September. In the meantime I will check back in here as and when I can.

Despite my absence from posting, my Wegener's Disease Facebook page following has continued to grow as more and more people find out about it. It now has 218 likes as of writing this post. That level of support just amazes me and I am so grateful for everyone who has liked my page. I hope that the page and this website has helped some of those people in some small way.

Thank you!  

Cindy Abbott finishes The Last Great Race

At her third attempt, Cindy Abbott has finished the Iditarod Last Great Race, a 1000 mile dog sled race through the Alaskan wilderness. The race took her over 13 days to complete.

Cindy is the first woman, and only the second person, to complete the race and climb Mount Everest. And all this while suffering from Wegener's Granulomatosis.

Cindy Abbott finishes the Iditarod while suffering from Wegener's Disease

Cindy Abbott finishes the Iditarod while suffering from Wegener's Disease

Cindy entered the race in 2013 and 2014, but had to scratch (pull out) before the finish due to personal injuries. In one race she carried on for almost 600 miles with a broken pelvis!

While training for her attempt on Mount Everest, Cindy was finally diagnosed with Wegener's Disease, although she had actually been suffering with it for 14 years. She went on to spend 54 days on the mountain and reach the summit.

It just goes to show that a Wegener's Disease diagnosis doesn't mean that your life is over - there is still adventure to be had!

If you would like to know more about Cindy, I wrote about her Ted talk in this blog post. You can also read more about the race on Knom Radio Mission.

Photo: Francesca Fenzi, KNOM


How chronic disease can affect your body image

I came across this great article today and had to share it. It's called How being sick affected my body image. It's a great read for anyone who suffers from a chronic illness, and perhaps even mores for friends and relatives of someone who suffers from a chronic illness.

Image by  Laura Lewis  used under Creative commons license 

Image by Laura Lewis used under Creative commons license 

I wrote a lot about this aspect of Alicia's battle with Wegener's Disease in my book, as I understood just how much it affected her. I wanted other people who read the book to be able to relate to that and not feel like they were on their own.

The writer of the article, Lisa Walters, is 26 years old and lives in Newfoundland, Canada. She suffers from chronic illness. Her website is called Damsel in a Dress.