FAQ's for the new Fanconi linkage test

[tanza]

Here is a link to the Endowment health pages with FAQ's on the new Fanconi linkage test... this is truely a wonderful time for our breed!!!

http://www.basenjihealth.org/linkage-faq.html

[basi]

We have a club show here in Germany at the begining of September and have organised a vet to come and take plood samples from as many of the B's as possible to be sent off and tested. It is such a brilliant break through for the breed

[tanza]

We have a club show here in Germany at the begining of September and have organised a vet to come and take plood samples from as many of the B's as possible to be sent off and tested. It is such a brilliant break through for the breed

That is great news... and yes.... it is a brilliant break through for our wonderful breed....

It is important that people ask before buying, have the parents been DNA tested for Fanconi?..... and don't take "our Vet said they are healthly"... as the answer.... It is important to educate the public that we have a DNA test for this terrible affliction... and now we can do something about it.

[dmcarty]

I have added a link to the health endowment page but I wanted to add a link to where the results are posted so that people could check but I can't find it. Is in on the OFFA page somewhere or is it somewhere else.

[tanza]

I have added a link to the health endowment page but I wanted to add a link to where the results are posted so that people could check but I can't find it. Is in on the OFFA page somewhere or is it somewhere else.

The results are at www.offa.org
In order to see all the Basenjis with Fanconi testing you need to first go to seach date. Then mark Basenji in the list of breeds. Go to the botton and in the seach by dates, enter in July 2007 to August 2007 and click seach. You will get all the Basenjis that have had OFA testing results posted for that time period. Since Fanconi test just started in July, you will get all that have been posted so far. Only the first set have been posted as they wanted the OFA certificates to be mailed before posting.

[dmcarty]

Whew - not so easy to get to but I got it - I wish there was a grid at the top CA - carrier and probably affected. is PI clear? or not posted yet.

[lvoss]

PI means Permanent Identification.

Reading the Numbers

BJ-FAC28/115M-PI

BJ = Basenji
FAC = Fanconi Marker Test
28 = 28th test registered
115 = age in months
M = Male
PI = Permanent Identification
CLEAR since there is no further notation

BJ-FAC53/31F-PI-CAR

BJ = Basenji
FAC = Fanconi Marker Test
53 = 53rd test registered
31 = age in months
F = Female
PI = Permanent Identification
CAR = Carrier

BJ-FAC78/7F-NOPI-IND

BJ = Basenji
FAC = Fanconi Marker Test
78 = 78th test registered
7 = age in months
F = Female
NOPI = no permanent identification
IND = test Indeterminate

Affecteds are not assigned a number.

[dmcarty]

Thanks - I'm sure once we all get going on this it will be second nature.

[dash]

Is it possible for even non-breeding dogs to submit for testing?

[lvoss]

Yes, all basenji owners can submit samples. You will need to go to the Canine Phenome Project website and sign up. Once you have registered your dog and entered its information you will be able to print a submission form with instructions for sending in samples.

http://www.caninephenome.org/

[jys1011]

I am super excited about this too!!! I just found out this weekend that TOPAZ's dad is clear :D :D :D very excited!! We find out about her mom this week. C3's dad is "undetermined" so we won't know about him. But still great news nonetheless!!

[tanza]

I am super excited about this too!!! I just found out this weekend that TOPAZ's dad is clear :D :D :D very excited!! We find out about her mom this week. C3's dad is "undetermined" so we won't know about him. But still great news nonetheless!!

Well, what you do know about C3's Dad is that he is either Clear or Carrier, but not affected... which is knowing way more then you did before... if C3's dam is clear then at worst you would have a carrier... if his dam is a carrier you have a 25% of a clear, 50% of carrier, 25% of affected.

[tanza]

I am super excited about this too!!! I just found out this weekend that TOPAZ's dad is clear :D :D :D very excited!! We find out about her mom this week. C3's dad is "undetermined" so we won't know about him. But still great news nonetheless!!

By the way, who are Topaz's and C3's sire and dam again?

[jys1011]

C3-El Dorado's Ungaro & Sadiki's Patriot Pride

Apparently his dad had squences of that a normal & a carrier....so the outcome is undefined. Gotta find out about his mom. Our breeder is checking out all of their dogs which is great since she knows his entire lineage :D

Topaz-Terrarust's Remote Control & El Dorado's Joie De Vivre

[tanza]

For anyone that wants to seach the OFA database for Basenjis tested for Fanconi and the results, go to www.offa.org
Then to search, put in Basenji for the breed of dog
Then in the report on the right hand side, scroll to Fanconi and then go to the bottom and hit search

[JazzysMom]

:( I just talked to Bryan and got some dismaying news. I already knew that her dam has Fanconi, but have just learned that her sire has tested as a carrier. Time to do heavy duty studying and be very, very diligent about testing her urine. I know it's not a sure thing that she'll wind up w/Fanconi, but it makes my heart heavy to know her odds are high.

On an up note, Keoki's sire tested clear so he *should* be okay. :)

Still, I AM thankful the test is there to give me the heads-up I'll need to educate and prepare.

TEST TEST TEST those dogs!!

[tanza]

:( I just talked to Bryan and got some dismaying news. I already knew that her dam has Fanconi, but have just learned that her sire has tested as a carrier. Time to do heavy duty studying and be very, very diligent about testing her urine. I know it's not a sure thing that she'll wind up w/Fanconi, but it makes my heart heavy to know her odds are high.

On an up note, Keoki's sire tested clear so he *should* be okay. :)

Still, I AM thankful the test is there to give me the heads-up I'll need to educate and prepare.

TEST TEST TEST those dogs!!

You did send it for Jazzy, right? We will keep our fingers crossed for you, she still can come back as a carrier and not affected...

[JazzysMom]

You did send it for Jazzy, right? We will keep our fingers crossed for you, she still can come back as a carrier and not affected...

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.

[khanis]

Let's not forget that a dog CAN have Fanconi and CAN live a normal life.
My BENNY is a perfect example.
Yes, he was on the protocol from Day 1 of his diagnosis, in November 2005.
He's been OFF the protocol for about 5 months now.
I had a very big decision to make...
continue to see my dog look like crap and feel like crap and stare at his food bowl from the couch...
or give him a better life without an upset stomach full of bicarb tablets.
I chose the latter.
Benny now eats like a champ..
and no dog better get near his food bowl....
he will chase them away with his louder than life growling...
he is ALWAYS ready to eat....
and ready for his upteem daily snacks..
these were things that he turned away when on the protocol....
I felt like I was watching him wilt away...
Now I see that my boy is thriving and PLAYING with the puppies....
and even jumping on the trampoline...
he dies for lure coursing....
and even wants to show again.....

Was he REALLY given a life sentence?
I've since changed my mind....
unless one knows he is Fanconi Affected....
they'd never be able to tell from looking at him,
or watching his actions.

Benny will be able to be seen in the SHOW RING at the BCOA National...
and walking my son around the sidelines the rest of the week.

Don't get me wrong.....
FANCONI SUCKS....
but it is not always a death sentence.

[tanza]

Let's not forget that a dog CAN have Fanconi and CAN live a normal life.
My BENNY is a perfect example.
Yes, he was on the protocol from Day 1 of his diagnosis, in November 2005.
He's been OFF the protocol for about 5 months now.
I had a very big decision to make...
continue to see my dog look like crap and feel like crap and stare at his food bowl from the couch...
or give him a better life without an upset stomach full of bicarb tablets.
I chose the latter.
Benny now eats like a champ..
and no dog better get near his food bowl....
he will chase them away with his louder than life growling...
he is ALWAYS ready to eat....
and ready for his upteem daily snacks..
these were things that he turned away when on the protocol....
I felt like I was watching him wilt away...
Now I see that my boy is thriving and PLAYING with the puppies....
and even jumping on the trampoline...
he dies for lure coursing....
and even wants to show again.....

Was he REALLY given a life sentence?
I've since changed my mind....
unless one knows he is Fanconi Affected....
they'd never be able to tell from looking at him,
or watching his actions.

Benny will be able to be seen in the SHOW RING at the BCOA National...
and walking my son around the sidelines the rest of the week.

Don't get me wrong.....
FANCONI SUCKS....
but it is not always a death sentence.

All of that is your decision and glad that it is working for Benny.... but not the normal case.... and at least now we can finally go forward... with life without producing Fanconi affected dogs...

[JazzysMom]

he did better OFF the protocol? How common is THAT?

[tanza]

he did better OFF the protocol? How common is THAT?

I think that every dog is different... on and off the protocol... everyone needs to make their own choices... I know people with Fanconi dogs that have been on the protocol for years and years and doing great... some not... think of how many dogs have Fanconi and people don't even know because they don't know to test.... I would think it is not very common... that they do better off the protocol... But more power to Benny.... and keep on keeping on...

[JazzysMom]

Dropped Jazz and Keoki's blood off w/Bryan for him to mail in.

I gotta tell ya, it felt a little ....I don't know..... like a drug deal. We met in the parking lot of a Krispy Kreme shop, and I passed off the plastic baggie of "stuff", then got into our separate cars and drove away. Gotta wonder what bystanders were thinking.

On an unrelated side note, while I was waiting for Bryan, this big burly guy got out of the car across from mine -- BIG guy, long, greasy looking hair tied back in a pony tail, black long sleeved T-shirt.... and a white denim pleated knee length skirt? {Didn't look like any kind of kilt I've ever seen}
I don't know, he just caught my eye.

[Terry]

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

[dmcarty]

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.

[tanza]

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....

[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:)

[tanza]

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.

[Jodie]

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!

[tanza]

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.

[Jodie]

That is exactly what I will do! Thanks.
Jodie:)

[tanza]

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?

[JazzysMom]

Have you heard anything about Jazzy's test?

No. It's been less than a week. How long does it typically take to get results?

[Vanessa]

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.

[JazzysMom]

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.

[Quercus]

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!

[JazzysMom]

That's what I'm hoping for.

And that Keoki will test clear, not carrier.

This waiting is such a pins-and-needles thing. I hate it. Whatever the results, I just want to know!!

[Quercus]

<<And that Keoki will test clear, not carrier. >>

How come? It doesn't bother me one bit if mine are carriers, if it is an animal for breeding, I will just find a clear to breed him or her to; and if not for breeding, doesn't really matter as he or she will live without any symptoms.

[JazzysMom]

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.

[Quercus]

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.

[tanza]

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

[JazzysMom]

good news is that he will not be affected


Oh, absolutely! And I am sooo thankful for that!:D

[red and white furever]

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

[tanza]

Great Post Lorraine... One thing that I will say however, from the B's that I know with Fanconi, one of the biggest things to watch out for is a UTI. This can really reek havic on the protocol... I think that it is worth when you have blood gases done (which is every 6 months if I remember correctly) have a urine test done too.... of course, JMO...

[JazzysMom]

Sigh.

I already have two human children w/Type I Diabetes, so being constantly worried about "Did I remember that....." "Did I handle that right..." is sort of my way of life. I suppose tossing a dog in the mix will be handle-able, I'll just have THREE medical regimens to micro-manage instead of two. bleh.

[red and white furever]

Pat - yes, UTI's are huge worry. Fanconi dogs tend to wall off infections, so even urine samples aren't always accurate. You learn to treat UTI's by symptoms (and hopefully your vet will understand this!!) - symptoms typically run anywhere from lethargy, to vomiting, to lack of appetite. I have, thus far, been very lucky in the regards that I haven't had to dole out antibiotics on top of bicarbs etc.
Feeding a food w/ probiotics in it and a bit of yogurt and a cranberry pill a day also helps. Most Fanconi owners I've run across use these methods to help ensure a healthy urinary tract.

[tanza]

Glad that you pointed that out and yes, sometimes UTI's are really hard to catch... so you are right, learning the symptoms for your dog is the key....