Health Information Coordinator

Health coordinator is a new position among the health focused committees.  Initially, goals for the coordinator will include increasing visibility of the health committee work through their reports set up as direct links on the web site left navigation menu for health committees, improve educational opportunities by having at least an index of Courier health articles available on the web site (and perhaps some of the health articles), to fill gaps on topics not covered by the health committees, and to support health committees in using electronic database storage of their information, if desired. 

You are welcome to contact me by email.  Please reference my contact information on the Committee Chairs page.

Addison's Disease

As your relatively new PWDCA health coordinator, I would like to make some observations on this important topic. (Note: the following was written in response to posts in October 2007 on PWDCA-L regarding Addison's disease. The fifth item has been updated with additional information and a reference – a publication by Dr. Anita Oberbauer on Addison's disease in the Portuguese Water Dog. Two Addison's internet list URL's are added to the second item.)

I haven't ever had an Addisonian dog, though I feel like it from the many contacts with Addisonian Beardie owners since 1996. I was involved in starting up 9 years ago the Addison's research project that is now at UC Davis with Dr. Anita Oberbauer.

First, thank you to the early adopters this time around, to tell us about their experiences of owning or having bred a PWD with Addison's. It is souls like you who have the potential to make change happen in the odd world of dog breeding - where "oh, I've never had a health problem in my line" can be heard and, where those who do reveal are chastised, run over the verbal coals with reputations ruined, and maybe even their dogs become excluded from others' breeding plans. Amongst Beardie breeders I know of who have been fortright about producing an Addisonian, they had no subsequent decline in requests for puppies. Those breeders seem to have been viewed as honest people doing their best to breed future healthy dogs.

What really enrages an owner is the breeder who denies that Addison's exists in their line - often to the detriment of the dog (and owner) while they fumble their way with the vets in trying to establish a diagnosis, the dog suffers, and the costs mount incredibly. On occasion the dog dies (often with a diagnosis of "renal failure").

So, if you have a dog with some of the non-specific signs of Addison's (poor eating, weight loss, weakness, diarrhea, waxing and waning of symptoms (see the March/April Addison's committee report) tell your vet that Addison's disease exists in PWDs and discuss the option to test for this disease. I understand that very recently availability of ACTH for the injection to do the gold standard test has been in short supply - I don't know how that may alter the testing options at this point.

Second, most dogs with Addison's disease can be managed well and lead quality and lengthy lives, even participating in vigorous performance venues. An Addisonian dog owner will soon become finely tuned to the most minute signs of stress in the dog, can titrate steroid administration as necessary in stressful situations, or know precisely when to see the vet. There are several internet dog Addisonian lists that have been supportive for owners - as with many internet lists, there will be factual info and fictional/myths - that can at times make it difficult to sort out the truth. If nothing else, these groups let an owner know that they are not alone in the world. You Addisonian dog owners become dynamic advocates for your dog's health management - just as you would do for a human member of your family - this is sometimes uncomfortable for the primary veterinarian so be patient as they learn to accept an owner as an active part of the management team.

Third, a reasonable % of Addisonian dogs will have other endocrinopathies - first made before or after the Addison's diagnosis. This is a phenomenon well know in humans where it is standard practice to screen for other endocrinopathies on a regular basis after the first endocrine diagnosis. The most common endocrine problem in dogs is hypothyroidism. In Beardies 21% of Addisonian dogs in BeaCon's open health registry are hypothyroid - the number varies with surveys done, but it certainly has never been zero. Thus, to those of you with Addisonian PWDs, please consider requesting a complete thyroid panel on your dog (not just a total T4) - especially if the Addison's is difficult to manage. Hypothyroidism is simple to manage and far less costly than Addison's. I will have more about hypothyroidism in the months to come with an article for the membership.

Fourth, some Addisonian dogs are well managed on fluorinef (oral pills). Many who were unstable on that drug do remarkably better on the approximately monthly shot – Percorten™-V. Owners have said that not only did the chemical imbalances disappear, but also the dog's personality was much better or a return to the "normal" for that dog. Treatment is costly in any case. Fluorinef is used in humans - Percorten™-V is not.

Fifth - is it important to know the frequency of Addison's in PWD's? Yes, it is if we want to have a grasp on the extent of the problem and if one would like to demonstrate a decline of Addison's from a baseline starting point whenever the mode of inheritance is defined and a genetic screening test becomes available to aid breeders. So where are we today? The following table gives the information available as of October 2007.

Summary of Addison's Incidence in PWD from Various Sources

How can we better get a handle on the frequency of the disease? REPORT, REPORT, and REPORT all dogs, without and with Addison's, to the HLD. Why do all dogs need to report? There needs to be a reliable denominator (total number of dogs) to calculate frequency of a disease or other event of interest. Since it is human tendency to report problems rather than wellness - the frequency may be skewed to the high side if there are not enough healthy participants. In due time (months) the HLD will become more user friendly - so please consider participating if you haven't so far. If you need convincing that reporting is important, just take a look at the decades of valuable epidemiologic data gathering in human medicine - how do we know what "causes" lung cancer, what contributes to heart disease? By data gathering and interpretation; then instituting preventive/early screening measures fosters a decline in the problem. The PWDCA has been effective in tackling other heritable diseases - now there is Addison's to deal with by establishing frequency figures and participating in available studies to determine mode of inheritance and to identify genetic markers or candidate genes.

Sixth - If your PWD has participated in either Addison's research project under the auspices of AKC CHF (see above table for grant numbers), it is urgent that your dog's condition be accurate in the research database. If your dog was normal when DNA was submitted and later developed Addison's, that is crucial for data analysis. If your dog was diagnosed with Addison's disease when DNA was submitted, but that changed (this occurs rarely) and the dog is now not being treated for Addison's disease, that likewise is crucial for data analysis.

For those participating in the UC Davis Research Project (Dr. Oberbauer), use this link to update information: http://cgap.ucdavis.edu/healthupdateform.htm. Do it now and put on your calendar to do it yearly. If your dog is no change from the when you submitted DNA (and in the future, from when you last updated), then you just write in no change.

For those participating in the Georgie project/Lark/Ostrander Addison's studies, apparently updating is done primarily by the Addison's committee, so please provide your update to them.

Elsa

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Last Edited:  September 22, 2009