Latest Lafora News:
- The results of testing done via the WHDC testing scheme are all now published on the Mate Select pages of the Kennel Club. Owners do not therefore necessarily have to send in Certificates as the results will appear automatically (which also means there is nowhere to hide for those breeders who claim they have had dogs tested when they haven’t or do not admit the real result of the dogs test.
- The Certificates for the Autumn testing session in Lichfield were received from Canada today and will be forwarded by email or post as soon as possible
- The Fitzpatrick testing session results are due soon, but no confirmed dates
- The next testing session will take place in Lichfield on 24th June. Details will be available on the WHDC website very soon, but in the meantime, you can register your interest by emailing the same address shown for the November session on the website. http://www.whdc.co.uk/latest-laforas-news.php
New Lafora Dachs-Fact Sheet available from Dachshund Breed Council
Please print this leaflet and take your your vet. If you are thinking of buying or breeding a miniature wirehaired dachshund, please readh.
Lafora makes it onto Channel 4 Crufts coverage
On March 8th, 7.15 p.m. Lafora featured as an example of how breeders, vets and pet owners have come together to develop and use a DNA test in order to help reduce and eventually eradicate the condition. http://www.channel4.com/programmes/crufts/4od#3662780
Kennel Club Press Release March 2014
Kennel Club approves Lafora Test for Mini Wire Dachshunds
The Kennel Club has approved an official DNA testing scheme for Lafora’s Disease (Lafora) in Miniature Wire-Haired Dachshunds following consultation with the breed club.
This test is offered by Dr Berge Minassian (firstname.lastname@example.org) at the Hospital for Sick Children in Canada, with support from the Wire-Haired Dachshund Club (WHDC) and further details can be obtained directly from either Dr Minassian, or the WHDC (www.whdc.co.uk).
Copies of all future test results issued by Dr Minassian will be sent directly to the Kennel Club, where the test result will be added to the dog’s registration details which will trigger the publication of the test result in the next available Breed Records Supplement. The result will appear on any new registration certificate issued for the dog, on the registration certificates of any future progeny of the dog, and also on the Health Test Results Finder on the Kennel Club website.
Results for dogs already tested can also be recorded, but owners will need to submit copies of the DNA certificates themselves. As many of the results previous to this official DNA testing scheme were submitted via an intermediary, any results submitted by an owner will be monitored to ensure accuracy in publication. If any owners have any concerns about their own results, they should have their dog(s) re-tested.
If the owner includes the original registration certificate for the dog (not a copy) then a new registration certificate will be issued, with the DNA result on it, free of charge. Please send any DNA test certificates to Health & Breeder Services, The Kennel Club, 1 – 5 Clarges Street, Piccadilly, London W1J 8AB, or scan and email copies of the certificates to email@example.com.
Lafora’s Disease is an autosomal recessive condition. This means that a dog must inherit two copies of the abnormal gene (one from the mother and one from the father) before its health is affected. A dog that inherits only one copy of the abnormal gene (from its mother or its father) will have no signs of the disease, but will be a carrier and may pass the gene on to any offspring.
However, by testing all breeding dogs for this condition, responsible breeders can safely use all dogs not suffering from this condition, to eliminate this condition over time to protect the diversity of the breed, without producing affected dogs. For more information on how to use DNA tests, please visitwww.thekennelclub.org.uk/media/324433/breeding_from_your_dna_tested_dog_web.pdf.
The Kennel Club continues to work alongside breed clubs and breed health coordinators, in a collaborative effort to improve the health of pedigree dogs. The Kennel Club is happy to consider a club’s request to add a new DNA test to its lists and would normally need a formal request from the breed’s health coordinator or a majority request from the breed clubs.
ENDS 3rd March 2014
Press Release Autumn 2013
The following article has been written for publication in various Dachshund and more general magazines. Look out for it and circulate when ever you see it!
Article 1: Latest on Lafora
Most of you will now be aware of the ongoing campaign to raise awareness of Lafora in mini wire dachshunds, an inherited form of myoclonic epilepsy. To date, of the dogs that have had the full spectrum test that identifies whether they are affected, carrier or clear (there is a simpler test that simply identifies whether they are ‘Unaffected’ but does not differentiate between carrier and clear), nearly 10% are affected, 35% are Carriers and 54% are Clear.
Sadly, there is still a long way to go before the uptake of the test is widespread. From analysis of recent Kennel Club Breed Records (Winter 2012 – Summer 2013), of litters registered:
Over 50% litters registered are from unsafe combinations: Not Tested to Not Tested, Affected to Carrier or Affected, Carrier to Not Tested or Not Tested to Not Affected (but could be carrier or clear). Many of these dogs may be carriers or clear, but some of them will be affected.
Looked at another way, of 357 puppies born in this period, less than 10% of them would be safe to mate without testing at least one of the breeding pair.
Puppies Registered Winter 2012 – Summer 2013
|Clear to clear||34||9.5%|
|Clear to affected||7||1.9%|
|Clear to carrier||8||2.2%|
|Clear to not affected*||49||13.7%|
|Clear to not tested||79||22.1%|
|Not affected* to not tested||25||7.0%|
|Not tested to not tested||155||43.4%|
*i.e. will not develop symptoms themselves but have not been tested to differentiate carrier from clear status
Faced with these statistics, it simply isn’t acceptable for any breeder to breed without knowing the status of the dogs. Whether they are big, small, a show breeder, a commercial breeder with a money motive, hobby breeder or the pet owner who wants another dog ‘like the one I’ve got as I’ve been told she/he is a good specimen’, there is a risk that puppies born will be bred from later irresponsibly and produce more affected puppies.
BUT breeders with top stud dogs have a special responsibility to lead the way publicly and refuse to put untested or known carrier studs, (however special they are, however many shows they have won) to known affected, carrier or untested bitches….. and that also applies to those breeders who flock to them in the hope of producing a champion dog.
I have recently heard from a non-showing, but fairly prolific breeder of dachshunds (amongst other breeds) that she and others are not having their dogs tested because of the restriction imposed under the WHDC subsidised testing scheme not to breed from tested Affected dogs. She said:
‘I know some people would rather go on breeding in ignorance than have their breeding stock wiped out on one go’.
How shocking…. people are prepared to continue to breed and sell dogs that may go on to develop a life changing illness, once they are with their future owners.
There are good reasons for placing the restriction. Firstly, unlike other undesirable genetic conditions like Cord1 PRA and distichiasis, this condition has the potential to turn a pet and its owner’s life completely upside down – read the article below to find out why. Not only that, but having a dog on expensive anti-epilepsy medications (which do not always work with Lafora anyway, and can have huge side effects) can be financially crippling unless the owner is lucky enough to have taken out the right Insurance policy.
Secondly, if the affected dog happens to be a popular stud, then the chances are that people will still clamour to use him again and again, rather than a less well known clear or carrier dog. That means he will have an effect on the number of carrier dogs (at least) still in the population that is out of all proportion …. and that takes us back to the responsibility that ALL breeders share to not add to the risk of more affected dogs being born.
Thirdly, we do not, as yet, know the impact on the welfare of an Affected bitch being bred from – given that it is a neurological condition, will the stress speed up the onset of the condition? There is some evidence emerging that Lafora affected dogs tend to be more nervous/highly strung than unaffected dogs. Is it acceptable to continue that temperament characteristic, simply because they are good physical specimen in the show ring? There are already some judges prepared to mark down dogs that exhibit such undesirable traits based on the Breed Standards requirement that the VISIBLE health and welfare of each dog should be part of their decision making. If show winning is so important, maybe in the future this will be an incentive not to breed from affected lines.
Fourthly, although no litters born from matings between affected dogs to untested, known carrier or unaffected dogs are shown in the figures above, we are aware that at least one Affected bitch has been exported to Poland to be bred from, introducing the condition there. Another known affected dog has been sold (via PreLoved)as a pet without advising the new owner of the dog’s status. With that sort of unethical behaviour, we simply had to take a strong stance.
Finally, after all that doom and gloom, let’s end with some more positive news. By the time you read this article, the Lafora test developed by the Toronto Hospital for Sick Children should have been formally recognised by the Kennel Club and will be awaiting approval to become a requirement under the ABS scheme. Whilst the sad fact is that there are many mini wire hair breeders who have chosen not to participate in the ABS scheme officially, many of them do adhere to the requirements, so hopefully this is one more step on the way towards minimising or even eradicating this condition at last.
For more information on how to get involved, go to www.whdc.co.uk/latest-laforas-news.php. To read more about the impact of the condition and to get involved in research fundraising go to www.laforadogs.org or contact me on firstname.lastname@example.org.
Article 2: Lafora – is it really that serious a condition?
Some people have suggested that lafora isn’t important because not all dogs go on to develop the symptoms. Sadly, the evidence so far is that that simply is not the case and the vast majority of tested affected dogs will exhibit clinical symptoms. Dr Clare Rusbridge, an internationally renowned veterinary neurologist, is working with me on research into just how the condition progresses over time and what the impact is on both the dog and the owner.
All owners of tested affected dogs have been invited to complete the survey but it is too early as yet to publish the full results. In the meantime, the comments of some of the owners of these dogs illustrate what it is like to live with a dog showing clinical symptoms that have had a life changing impact on them and their owners:
“My dog becomes very confused and upset easily. Any change in circumstance will result in indoor toileting. He is unable to manage the stairs, can no longer jump up on the sofa, can’t hear where your voice is coming from, complete blindness, continual head jerking, panic attacks at the groomers & with certain loud noise (vacuum or hairdryer etc). Doesn’t play any games, refuses to walk out on the lead, back legs collapse. He is extremely HIGH MAINTENANCE!!”
“At the age of 8 she hasn’t shown any of the classic Lafora symptoms, but she is like an old lady, unlike my other 8 year old is busy attending shows in the Veteran class”
“In sunlight jerks and blinks when walking along a road as she passes from shadow to light – to th extent I try not to walk her in sunlight. In winter, has difficulty coming from outside into the house because of lighting – she cannot come through a wide open door, I have to partially close it.”
“He has a glazed expression, almost like he is not aware you are there”
“He became very sensitive to light, severe twitching, nervousness, aggression and at time he used to just stand and not move for minutes at a time. Can only describe as the light being on and nobody in.”
“Panic attacks seemed to be set off by light mostly, but sometimes there didn’t seem to be any particular reason for them. They became worse gradually from age 8.5 and by age 9 onwards became much for frequently.”
“Voracious Appetite, aggression over food, ataxia, adverse reaction to loud noises. Sensory awareness to roasting meat which culminated in panic attacks and seizures”
“Started off by jerking back from sudden movement or light, shiny objects, bits of foil, etc. It gradually got worse and going for walks became more difficult as she jerked at blades of grass in her path, twigs and movements. She eventually struggled with uneven ground, longish grass and would stop tell we went back to move her past things. Getting through the door was like climbing Mount Everest. She never had a quiet sleep, she was continuously jerking and twitching. She had panic attacks which were heartbreaking and small fits”
The article below was written by the owner of a mini wire, Daisy, who started exhibiting symptoms some time ago, when the condition was less well known. Sadly, before that, she had already bred from her and has subsequently found out that Daisy’s son, Bertie, is also affected, which means there is a possibility that the other puppies in the litter are also affected. Pat tries to keep positive about her two dogs, whom she loves dearly, but the impact on her and her husband, John, has been life changing.
In one aspect, Pat is fortunate in that her dog is under the care of Clare Rusbridge, the leading UK expert on Lafora, but 80% of survey respondents reported that the possible diagnosis of lafora was not recognised by the vet when first presented.
MY LIFE WITH DAISY, BERTIE AND LAFORA
Some of you may have heard of my mini-wires Daisy and her son Bertie through the stories pages on the blogs on dogs section of http://laforadogs.org and read about the ups and downs we have experienced because they both suffer with Lafora’s disease.
Daisy is now 11 years old. She was and still is a playful and affectionate little dog. She plays quite a lot and thinks that every parcel that comes to the house contains a new toy for her. Bertie is a typical boy and likes to think he is in charge, but very beguiling all the same. They have a good relationship together.
My story began when Daisy was 7 and diagnosed with Lafora’s. Havng read up on the disease, my husband John and I were shocked that this could happen to one of our mini wires. However, we decided we would try and do all we could to make her life as pleasant and comfortable as possible.
Since that time we have been extremely fortunate that she has been under the care of Dr Clare Rusbridge, who recognised the symptoms and has been a continuing source of support to us all. For a while Daisy was not taking any chemical medicines, only homeopathic ones, but the seizures became more frequent and so she was prescribed medication. In September 2012 she had to undergo a routine dental and unfortunately, did not come out of the procedure at all well. In fact, immediately after the dental, she did not know me at all and had several petit mal seizures during the following 4 days. She sat in our sitting room staring into space and looked as though she were a stuffed toy dog. I did not begin to get ‘my Daisy’ back until the fifth day.
As I write I can honestly say that she is not quite the same little dog as she was before the dental but has improved considerably and that is some consolation. She is showing signs of ataxia now but copes well. Since then, she has had no further full seizures, but she is gradually becoming more unsteady on her feet and is easily agitated. She frequently has bad nights when she is extremely disturbed and very difficult to console. She is stressed, restless and jerks frequently. I have tried to monitor these occasions and have come to the conclusion that they generally occur when we’ve had visitors or workmen in the house. This could be the start of panic attacks that are a known symptom caused by the insoluble Lafora platelets interfering with neurological signals.
A couple of years ago I had Bertie tested for Lafora’s and the result showed that he was ‘affected’. That meant it was just a matter of time before he too began to show symptoms. We noticed he began to jerk slightly several weeks just before Christmas 2012 and then in March 2103 when he was out for a walk in the woods, he had his first seizure. It was very severe, and he was extremely distraught, far more so than Daisy had ever been. I immediately contacted Doctor Rusbridge who subsequently prescribed Bertie medication and thankfully, so far, he hasn’t fitted again. I am sure you can imagine what a blow this was to John and myself.
Daisy and Bertie both have reasonably happy little lives, and of course, being dogs, accept what happens to them without worrying. I do all the worrying for them. They have good and bad days, Daisy especially, but as the disease is progressive this is bound to happen.
Although we try to keep their lives as normal as possible, we have to make enormous adjustments. We try and reduce the jerking as much as we are able, so therefore avoid bright sunlight, dappled shade, loud noises, traffic, bright lights on television and many more things besides. We find going out with Daisy and Bertie now requires far more planning than it used to when we could just pop them in the car and go off for a day.
We are both retired and this is not how we planned our retirement to be. Because both Daisy and Bertie mean so much to us, we have been prepared to adjust our lives to cope with this horrible condition. After all, it is not their fault that they are Lafora dogs.
When Daisy was first diagnosed, I hoped and prayed that maybe a cure, or at least some treatment to halt the progress of the disease would soon become available. This has not happened so far, but we must live in hope, not just for us mini wire owners, but for the parents of young children who have also had their lives devastated by the horrors of Lafora.
I have read and been told about some breeders who have been reluctant to have their breeding stock tested for this disease. I can only hope that common sense will prevail and now that a comprehensive test is on the horizon, all responsible breeders will have their dogs tested. This will help reduce the number of other owners from suffering the heartache that we have both endured. To me it seems imperative that this dreadful disease is eradicated from our beloved mini-wires as soon as possible.
I send my warmest wishes to all owners and devotees of mini-wires, but especially to those who own and care for Lafora dogs.
Dachshund Health Report
This website is dedicated to Mini Wire Dachshunds and other dogs with Lafora. However, it is important to remember that Dachshunds generally suffer from few health problems and are long-lived, provided they are kept well-exercised, fit and fed on a healthy, balanced diet. If you have had any health problems with your dachshund, please take a few minutes to complete the Dachshund Breed Council Health Survey Form at http://www.uk-dachshund-health-report.org.uk/