FAQ's for the new Fanconi linkage test
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Just to put in my 2 cents - if being off the protocol is working for Benny, I'm thrilled to hear it! Can't wait to see him strut his stuff at the National!
BUT, don't ever make the mistake of thinking that this will be effective for 99.99% of Basenjis diagnosed with Fanconi. Dr. Gonto developed the protocol to try to save the life of his own Basenji, Cenji, over 20 years ago. It's undergone revisions and updates of course over time, but the plain truth is that Fanconi is a progressive and fatal disease. The protocol offers Basenjis the chance to live a 'normal' life span. It has been the subject of research and written up in the AVMA Journal, and it was proven to be the most effective way of treating the disease.
I agree with Pat, too. The marker test offers us the most hope so far of someday eliminating this!
Terry
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I've always felt in my gut (how's that for scientific) that faconi as a Syndrome was likely to have a variety of ways that the symptoms can manifest itself. Given the different ages of onset and the speed of decline if not treated - I think that it's likely to look 'different' in some animals. It's not just get it at 4 then this then that - the range of ages where they become symptomatic is just too different.
I'm not saying that the test is not effective or good tp dp or anything - I'm just saying that just as some people get the same diseases and have different outcomes, and response to protocols - I would expect the same with dogs.
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I've always felt in my gut (how's that for scientific) that faconi as a Syndrome was likely to have a variety of ways that the symptoms can manifest itself. Given the different ages of onset and the speed of decline if not treated - I think that it's likely to look 'different' in some animals. It's not just get it at 4 then this then that - the range of ages where they become symptomatic is just too different.
I'm not saying that the test is not effective or good tp dp or anything - I'm just saying that just as some people get the same diseases and have different outcomes, and response to protocols - I would expect the same with dogs.
The good news is that we have a test now… and it is certainly better the breeding in the dark or best guess that we all have been doing in the past... and anyone IMO that breeds or purchases a pup that has not been tested is IMO "pretty out of it"..... clearly it shows carriers, affecteds and clears... why anyone in their right mind would breed anything less then Carrier to Clear or worst case an affected sire to a bitch... would be beyond me.... Carrier to Clear would produce at worst all Carriers... Affected to Clear would produce all Carriers that could (should) be bred to clears....
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I'm alittle confused..please bear with me. Since I don't know where Lillie came from (adopted from a shelter) and she is now approx. 1 1/2 years old, should she be tested now. Also, is this something my vet can do or is it only available thru canine phenome? Sorry if these questions have already been asked but I don't want to wait if it's important to test Lillie now. Thanks for the help.
Jodie:) -
I'm alittle confused..please bear with me. Since I don't know where Lillie came from (adopted from a shelter) and she is now approx. 1 1/2 years old, should she be tested now. Also, is this something my vet can do or is it only available thru canine phenome? Sorry if these questions have already been asked but I don't want to wait if it's important to test Lillie now. Thanks for the help.
Jodie:)Your Vet can not do this test as it is a DNA test. However any Basenji can be tested… you can do it now with the linkage test or wait till next year when the direct DNA test will be out. Since she is only 1 1/2 and since normally Fanconi starts at 3yrs or later, there is nothing wrong with waiting for the direct test... if you don't want to wait you can have it done now. Your Vet needs to send the blood to U of Mo since that is were the DNA test is being done. You must enter your dog on the CPP site (and they do not need a registration number either, there are many that are rescues, etc that are on there and being tested). You can find the details of the test at www.basenjihealth.org and you will find the CPP site links. Once you enter her on the CPP site and note that there is no DNA on file for her, you will get the form that you need to have with the information for the blood drawl, how much and where to send it.
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Pat-Thanks for the info. I entered Lillie's info on the CPP site. I will probably wait until next year for the direct DNA test. Do you think most vets know about Fanconi? Just curious. Thanks again for clearing this up.
Jodie:)
PS HAPPY BIRTHDAY OJ!I would say it is about 60/40 that Vet know about Fanconi… which is why always a good idea to take the information with you (print out of the protocol) and give it to them for your dogs file.
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Bryan is picking up the blood this week and it will be sent in. I have my fingers crossed, believe me. In the meantime, I'm going to start studying as much as I can now so that if things don't go the way I hope, I'll be ready to jump on this as soon as it shows up.
Have you heard anything about Jazzy's test?
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I heard it takes up to 14 days.
I am about to submit Chance's blood work this week.
It's great that we have this test now. I know its still new but its better than nothing.
I think everyone like me is nervious about getting the results. I can't stop thinking about it. -
I'm pretty sure I know Jazzy's results – with a diagnosed mom and a carrier dad, it is not going to be fantastic news.
Keoki, I have hope for..... His mom's a carrier {Jazzy's grandma}, but his dad is clear.
Well, she would still have a 50/50 shot at being a carrier…so it might be fine!
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He may be used for breeding, and it just seems like it'd be easier {more options for breeding} if he's clear.
No concerns for his own health.
Yes, true more options for sure…..for some reason I thought he was placed as a pet.....but he sure is a nice boy, I can see why if Brian changed his mind about showing/breeding him.
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He may be used for breeding, and it just seems like it'd be easier {more options for breeding} if he's clear.
No concerns for his own health.
Well, there are lots of clears that he could be used on…. so should not be a problem... good news is that he will not be affected
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To Jazzy's Mom,
I know you're worried about Jazzy's results. I also know you're a great b Mom! I won't lie and say it isn't hard to have a Fanconi afflicted dog - it is. It's the first thing I think about when I get up in the morning, and usually the last thing on my mind when I go to bed at night. I worry about Storm's meds and next round of blood gas/ full blood panel tests and how he's responding to the Protocol.
But honestly, I think his disease has more of an impact on me than on him. He's his typical self - cat pouncing, squirrel chasing fiend. If you didn't know he had Fanconi, you couldn't tell by his actions or how he looks. He's a typical 'senji devil.
It's the emotional "Mom stuff" that's hard - but you do it, it becomes a part of your routine, and before you know it, it's old hat counting out the pills, wrapping them in some doggie delight so they're easily adminstered. The worry never stops though - are you doing everything in your power to make sure they're staying well, is their quality of life good, etc. It's an emotional drain (esp. at first and that's where having great friends helps tremendously!!!) and it's so overwhelming at first.
I feel confident that IF Jazzy's results come back as afflicted, you're going to be a great Fanconi B. Mom! Hang in there and know my fingers are crossed that both your babies come back A-OK!Lorraine and Stormie Dog
