Living with Lafora – Daisy’s Story

DaisyI felt the bottom had fallen out of my world in November 2009 when I realised that Daisy was suffering with Lafora’s.  I had been to my vet a couple of weeks previously because I noticed her head was shuddering when something invaded the periphery of her vision. He thought it possible she had some parasitic problem.  Somehow though, in the back of my mind there lurked a more sinister reason for her symptoms and then one night I remembered about Lafora’s.  I decided to re-visit my vet that week, but before I was able to arrange an appointment, Daisy had her first fit when out walking with her son and my husband. 

So that very evening I went to my vet armed with all the details I could find on the internet about Lafora’s and of Dr Clare Rusbridge, a neurologist from Wimbledon who has been involved with the disease for many years.

 Daisy was referred to Dr Rusbridge the following week, and it was only after seeing her that I began to put her illness in perspective.  I was not going to lose her and hopefully with medication when necessary, the disease could be controlled and I would have her with me for many years to come.

 Dr Rusbridge was very thorough and talked through necessary changes to Daisy’s lifestyle and her diet.  Although I have three mini-wires, I have been able to implement these changes, but still feel I am on what is nowadays called ‘a learning curve’.

After a lot of investigation, I’ve developed a diet which appears to be working for Daisy, reproduced on this website here

 Although Daisy can no longer run free in the fields chasing rabbits, most of her pleasures in life can be maintained.  She still plays with her toys, which have been a big part of her life so far, and can still enjoy walks, even in the countryside, if she is kept on a lead.  It may not be as before, but she still seems her happy little self with the new regime.

 To date she has had 3 fits, and with each one I think “Why my Daisy?” and would wish that she could be spared the discomfort.  But in some ways, so my friends tell me, Daisy is lucky that she has me and will be well looked after for always. Daisy will be eight later this month (April 2010) so we are aiming to be together for quite a while yet.

 It is encouraging that the Wirehaired Dachshund Club have instigated a testing programme for Lafora’s with a view to investigating whether it can be eventually be bred out of the breed and future owners will be spared the heartache that I and others like me have to go through. The end result – Lafora free mini wires – can only be achieved with the willingness and complete co-operation of those responsible breeders who put the welfare of their dogs first.

If you are unfortunate to have a mini-wire showing symptoms of Lafora’s, visit your vet, but do not feel upset or let down if he/she does not know about the disease. Unfortunately because it is rare, the majority of vets will not recognise it straight away. 

 There is also the possibility that there are some mini-wires out there who might have Lafora’s, and have been incorrectly diagnosed. Do re-visit your vet if you are in any doubt. Fortunately I had read about it and was able to talk the symptoms through with my vet before he agreed to refer Daisy to Dr Rusbridge.  Neither he, nor my local homeopathic vet had heard of Lafora’s before Daisy was diagnosed although both have spent many years in the profession.  If it is any consolation, I have since mentioned Lafora’s to two doctors at my local health centre, and neither of them had heard of the human form of the disease.  

I have had several life threatening illnesses myself and know that it is of the utmost importance to keep positive and that is how I feel about Daisy. That can be easier said than done, especially when she has a fit, because when I see her distressed I too am distressed. However, I am hoping that new drugs could become available soon that may help treat Lafora’s, and I keep reminding myself that no matter how awful it is for me watching my adorable Daisy cope with the symptoms, how much harder must it be for parents who have children suffering from this horrible disease.

Pat Debley April 2010

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