I have a five year old Basenji female that has just been diagnosed with Fanconi. I'm looking for any treatment information available.
Thank you.
OFA Fanconi Results
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For those who are commenting on those who have not used the test yet. I am one of 'those' but since I have no breedings planned - it seeme prudent to wait until those who were breeding or had bred recently got their stuff done. I haven't bred a litter in 4 years (maybe 5, I forget).
I like to think that others are waiting, like me.
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I was told…. so it's not "from the horse's mouth" but I thought a reliable source...that the testing was originally geared for those currently breeding, but has since opened up for everyone. IF that's true, then you're probably good to go any time.
But again, I'm going on what I was told.
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BUT - if I'm not planning on breeding until POSSIBLY next fall - why not wait a bit and see if the full test becomes available before then? I know that there are folks who are just not going to test, some we know, some we don't some we know are puppy mills, some are just obstinate
I just want folks to stop and think that there are some of us just waiting - no reason to test right now and if a more complete test is going to be available - why not wait. -
I was told…. so it's not "from the horse's mouth" but I thought a reliable source...that the testing was originally geared for those currently breeding, but has since opened up for everyone. IF that's true, then you're probably good to go any time.
But again, I'm going on what I was told.
That is true, but as test requests come in… people that have marked "breeding this year" will get "pushed" up on the testing.... and some taken off till the next run.... It is and has been open to anyone... just depends on your needs to see where/when the test needs to be included...
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BUT - if I'm not planning on breeding until POSSIBLY next fall - why not wait a bit and see if the full test becomes available before then? I know that there are folks who are just not going to test, some we know, some we don't some we know are puppy mills, some are just obstinate
I just want folks to stop and think that there are some of us just waiting - no reason to test right now and if a more complete test is going to be available - why not wait.Right…no NEED to do the test if you aren't breeding this year. I did all of mine, just because I couldn't stand the not knowing. But I had some pretty high risk dogs here, and I wanted to know, regardless of whether or not they are being bred this year.
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I tested because I felt it was important information for my puppy buyers to have.
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BUT - if I'm not planning on breeding until POSSIBLY next fall - why not wait a bit and see if the full test becomes available before then? I know that there are folks who are just not going to test, some we know, some we don't some we know are puppy mills, some are just obstinate
I just want folks to stop and think that there are some of us just waiting - no reason to test right now and if a more complete test is going to be available - why not wait.I think that because many of us have "scary" pedigrees or in the case of a rescue, unknown pedigrees, personally, I would want to know.. and that is why I tested… to be sure and let my puppy people know what the status is....
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Out of curiousity, I downloaded the OFA FS data into Excel and computed a few basic statistical results, as follows:
Total sample: 875
Males: 412 (47.1% of sample)
Females: 463 (52.9% of sample)
Total AFS: 66 (7.5% of sample)
Males AFS: 32 (7.8% of Total Males)
Females AFS: 34 (7.3% of Total Females)
Average age of Basenji with AFS tested: 4.7 years
Total CARRIERS: 333 (38.1% of sample)
Male CARRIERS: 169 (41.0% of Total Males)
Female CARRIERS: 164 (35.4% of Total Females)
Total Indeterminates: 29 (3.3% of sample)
Male Indeterminates: 15 (3.6% of Total Males)
Female Indeterminates: 14 (3.0% of Total Females)Although I recognize that this OFA sample is hardly a statistically significant and accurate representation of the basenji population at large, I was still stunned by the percentage of carriers identified at 38.1% of the tested population.:eek: It's not really a wonder that 7.5% of the sample turned out to be AFS, which is roughly consistent with the 10% estimated FS incidence rate that has been mentioned over the years. Another thing that was clear is that the gender appears to have no bearing whatsoever on any of the 4 possible types of results…in other words, both males and females are equally susceptible to being AFS, carriers, indeterminate, or normal/clear.
What this analysis means to me personally is that since my male tri, Buddy, is a Hofer pup, and it is very probable that his Sire, Hofer Sniffer, was either a carrier or AFS, I am a bit more concerned now that his Dam has a good chance (i.e., 38%) to have been a carrier.:( Even though I'm not a breeder, and Buddy is neutered, for my peace of mind, I need to get Buddy's DNA sent into the lab asap to get his probability of AFS determined.
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Also of note is that the number of AFS would really be much higher if many of the dogs that are already spilling had or are tested… so that % IMO is off because of this fact. So I think that the 10% might be somewhat higher.
And I am not surpirsed by the number of carriers..., in fact I am surprised that we don't have more affected... What it tells me is that breeders for all these years did a pretty good job trying to "do the right thing" in regards to breeding. Another thing that has been really a positive is that the entire Basenji community has come together, there has been no finger pointing, no "I told you so"... everyone has been supportive to people that have not had good results... and I am so very glad that it is an open data base. I wish that Hip results were open also....
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Also of note is that the number of AFS would really be much higher if many of the dogs that are already spilling had or are tested… so that % IMO is off because of this fact. So I think that the 10% might be somewhat higher.
And I am not surprised by the number of carriers..., in fact I am surprised that we don't have more affected... What it tells me is that breeders for all these years did a pretty good job trying to "do the right thing" in regards to breeding. Another thing that has been really a positive is that the entire Basenji community has come together, there has been no finger pointing, no "I told you so"... everyone has been supportive to people that have not had good results... and I am so very glad that it is an open data base. I wish that Hip results were open also....
Tanza,
I now understand why you asked me in another thread how & why I thought Buddy's Dam was likely to be clear. Before my analysis of the OFA data, I had no idea how prevalent the gene was in the breed.
Your intuition and experience about stating that it is remarkable that there aren't more AFS based on these stats makes perfect sense based on some further simple statistical analysis (i.e., Punnet Squares) below. I computed the simple probability of each type of result assuming the use of OFA data only, doing pairings on a strictly random basis, and for the sake of simplicity, assuming that the 3.3% of indeterminates are clear. The results imply that responsible breeders have done the basenji community a great service in reducing the actual probabilities by removing the "random" factor with responsible (as far as could be done) pairings.
(Disclaimer: stats below should not be construed as reflecting probability for the overall basenji population at large. Please feel free to correct me on any noted errors):
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Probability of pairing a AFS to an AFS: Less than 1% (.06) (All offspring would be AFS).
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Probability of pairing a carrier to an AFS: 2.9% (probability of 50% of offspring would be carriers and 50% AFS)
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Probability of pairing a carrier to a carrier: 14.5% (probability of offspring being 25% clear, 50% carrier, 25% AFS)
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Probability of pairing a carrier to a clear: 20.7% (probability of offspring being 50% carrier, 50% clear)
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Probability of pairing a clear to AFS: 4.1% (probability of 100% offspring being carriers)
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Probability of pairing a clear to a clear: 29.6% (probability of offspring being 100% clear)
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I would just like to repeat that if any one owns a clinically diagnosed Fanconi Affected dog and has not submitted a blood sample to the Canine Phenome Project, please do so. If the cost of drawing and shipping the blood is the deterrent, see if there is a blood draw clinic planned for your area sometime soon. Dr Johnson's one request from the basenji community at his presentation was that anyone with a clinically diagnosed Fanconi Affected dog who has not already submitted blood do so because they need those samples to find the actual gene. If you submit blood from a clinically diagnosed Fanconi Affected be sure to write on your form that the dog has been diagnosed as Fanconi Affected, spilling sugar, blood gases, etc. You will not be charged for the marker test.
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I would just like to repeat that if any one owns a clinically diagnosed Fanconi Affected dog and has not submitted a blood sample to the Canine Phenome Project, please do so. If the cost of drawing and shipping the blood is the deterrent, see if there is a blood draw clinic planned for your area sometime soon. Dr Johnson's one request from the basenji community at his presentation was that anyone with a clinically diagnosed Fanconi Affected dog who has not already submitted blood do so because they need those samples to find the actual gene. If you submit blood from a clinically diagnosed Fanconi Affected be sure to write on your form that the dog has been diagnosed as Fanconi Affected, spilling sugar, blood gases, etc. You will not be charged for the marker test.
I think this part needs to be repeated, because I didn't realize that until Dr. Johnson's talk. The MORE Fanconi affected samples they have, the easier and quicker it will be to isolate the actual gene that causes Fanconi..and that will result in a less expensive, more accurate, easier to execute test for all of us.
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Tanza,
I now understand why you asked me in another thread how & why I thought Buddy's Dam was likely to be clear. Before my analysis of the OFA data, I had no idea how prevalent the gene was in the breed.
Your intuition and experience about stating that it is remarkable that there aren't more AFS based on these stats makes perfect sense based on some further simple statistical analysis (i.e., Punnet Squares) below. I computed the simple probability of each type of result assuming the use of OFA data only, doing pairings on a strictly random basis, and for the sake of simplicity, assuming that the 3.3% of indeterminates are clear. The results imply that responsible breeders have done the basenji community a great service in reducing the actual probabilities by removing the "random" factor with responsible (as far as could be done) pairings.
(Disclaimer: stats below should not be construed as reflecting probability for the overall basenji population at large. Please feel free to correct me on any noted errors):
-
Probability of pairing a AFS to an AFS: Less than 1% (.06) (All offspring would be AFS).
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Probability of pairing a carrier to an AFS: 2.9% (probability of 50% of offspring would be carriers and 50% AFS)
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Probability of pairing a carrier to a carrier: 14.5% (probability of offspring being 25% clear, 50% carrier, 25% AFS)
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Probability of pairing a carrier to a clear: 20.7% (probability of offspring being 50% carrier, 50% clear)
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Probability of pairing a clear to AFS: 4.1% (probability of 100% offspring being carriers)
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Probability of pairing a clear to a clear: 29.6% (probability of offspring being 100% clear)
Those are correct and also if you go to the health endowment site they are posted there also… but thanks for posting that here also. It is good for all B owners to see and learn about Fanconi.... Right now the Indetermine as to be consider as carriers until we have a direct test. I do know of one Indetermine that has sired an affected.
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I think this part needs to be repeated, because I didn't realize that until Dr. Johnson's talk. The MORE Fanconi affected samples they have, the easier and quicker it will be to isolate the actual gene that causes Fanconi..and that will result in a less expensive, more accurate, easier to execute test for all of us.
Yes, Lisa, thanks for post this again… it is very important that affected dogs be sent in to help develop the direct test....
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Those are correct and also if you go to the health endowment site they are posted there also… but thanks for posting that here also. It is good for all B owners to see and learn about Fanconi.... Right now the Indetermine as to be consider as carriers until we have a direct test. I do know of one Indetermine that has sired an affected.
You mean to tell me I wasted my time punching a calculator this morning???
Oh well, at least I gave myself a basic stats refresher course :D. So far, my Hofer tri male, Buddy, is passing his monthly strip testing. -
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Probability of pairing a AFS to an AFS: Less than 1% (.06) (All offspring would be AFS).
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Probability of pairing a carrier to an AFS: 2.9% (probability of 50% of offspring would be carriers and 50% AFS)
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Probability of pairing a carrier to a carrier: 14.5% (probability of offspring being 25% clear, 50% carrier, 25% AFS)
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Probability of pairing a carrier to a clear: 20.7% (probability of offspring being 50% carrier, 50% clear)
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Probability of pairing a clear to AFS: 4.1% (probability of 100% offspring being carriers)
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Probability of pairing a clear to a clear: 29.6% (probability of offspring being 100% clear)
Actually, if you want to get technical, these are not really accurate.
For example, when you breed a carrier to a carrier, you do not get the above percentages….
what should be known is that EACH pup has 25% chance of being clear, 25% chance of being affected, and a 50% chance of being a carrier.
That is quite different than how it is stated above.These percentages can be figured by using a Punnett Square... or reading the Fanconi FAQ.
In regard to the % of Affecteds on the database, it is WAY OFF compared to the number of affecteds out there. I know of at least a dozen affecteds, if not close to two dozen, that are NOT on the database. Many have samples in the CPP, but just not on the database. Having them in the database does not assist in the researchers finding the gene. It just tells everyone who the affecteds are, or are not.
Many folks know of a few of my dogs that are affected. I had probably the largest sample of dogs in the final testing phase for the linkage test. Are any of those on the database? Some of them. For those that are affected, I know they are affected, and seeing them on the database will not change their life in any way. It basically gives others a reason to point fingers. Been there, done that.
For those affecteds that I know of that don't have samples in...
you can lead a horse to water but you can't make it drink.
I am tired of trying to advocate to these people for health research...
I've even given their names and contact info to Jon Curby in hopes he could twist their arm. I doubt it. Those kind of folks find it easier to hide their head in the sand and deal with it themselves.Best of luck on your Hofer boy's linkage test results.
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I meant to add, that my Benny (the handsome boy up in the corner) strip-tested clear until 3 weeks before his 9th birthday (I tested him at the request of Jon Curby, as they were ready to run assays and he wanted verification that my non-affecteds were still non-affecteds).
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I believe that spreading the word in as many basenji venues as possible can only help. Even if it only informs 1 person who sends in a sample that means we are 1 sample closer to finding the gene for the disease.
If anyone has a clinically affected Fanconi dog, please consider submitting a sample of blood to the Canine Phenome Project, http://www.caninephenome.org. It is by participating in research like this that every basenji owner can help to ensure that the basenji breed will survive for many generations to come. I very much like the old BHE fundraising campain, The Reason Why, which showed a basenji puppy. That is the reason for participating and helping in any way we can, for the health of our next basenji.
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I sent Tiggy's sample in on Thursday so just now the sit around and wait game
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Myrans mum´s results came back as clear and his dad is also clear :)Now to a stupid question wouldn´t it be on the safe side to test Myran just incase as the marker test isn´t 100%.
