ADPKD Information Event

This short blog is on the excellent Autosomal Dominant Polycystic Kidney Disease (ADPKD) event held at Salford Royal Hospital on Saturday 16th November, 2013.  The event was organised by Tess Harris of the PKD Charity and hosted by Dr Grahame Wood, consultant Nephrologist at Salford Royal.

If I had to sum up the event in one word that word would be ‘Progress’.

Progress one.
Dr Kath Hillman gave the clearest explanation I’ve heard of the genetics behind ADPKD and in the process addressed some of the false preconceptions that I and many others have acquired over the years.  Put simply, if one parent has ADPKD then any child of that parent has a 50% chance of inheriting the disease.  When my mother was diagnosed with the disease I believed that ADPKD affected the first born child and only females.  I’ve no idea where or when that belief arose but clearly it’s incorrect.

Progress two.
In August of this year the US Food and Drug Administration (FDA) vetoed the approval of a drug called Tolvaptan which for a number of years has given ADPKD sufferers hope that a treatment would prevent or slow down the development of the cysts that eventually destroy the kidney.  The FDA decision was based on the discovery of liver problems in some of the patients involved in the trial coupled with a lack of data associated with 23% of patients in the trial.  The good news is that the drug company may amend the trial and try again and the European Regulator is also interested in pursuing further trials.

Professor Pat Wilson, chair of the PKD Charity Research Advisory Board give a detailed explanation of the cell biology that causes ADPKD and the many strands of research that are currently taking place.  The majority of those strands are focused on slowing down or stopping cyst development and cover solutions from drugs to diet.

It struck me during Professor Wilson’s talk how lucky we are that we have people with the passion and dedication to devote themselves to research potential treatments and cures for our condition.

Progress three.
It was in the area of transplantation of ADPKD patients in a talk by Mr David Van Dellen, Consultant Transplant Surgeon at Manchester Royal Infirmary, that I sensed real progress.  I’m a transplant patient just past my tenth anniversary and the progress and change over that ten year period amazed me.  Not only are surgeons now transplanting from donors who in the past would have been incompatible with the patient including those with differing blood types but they now have techniques to flush toxins and antibodies from donor kidneys.  This news, coupled with the work that Dr Grahame Wood and his colleagues are performing looking for potential live donors may mean an increase in the number of ADPKD sufferers that don’t have to dialyse prior to transplantation.  Real progress that has a personal resonance as my son is also a sufferer of ADPKD.

I’ll end by saying you should try to get to events like this as they provide such valuable information and advice.  I began this blog by using the word Progress to sum up the days events.  I’ll close by choosing two more words. Optimism and hope.

Rob Finnigan

Profile photo of Rob Finnigan

I’m an ADPKD patient who was lucky enough to have a transplant in 2003 after only eleven months of dialysis. I'm the north-west Patient Advocacy & Support Officer for the BKPA and my interests, other than my role within GMKIN, include sport, music and politics . Follow me on Twitter: @finnigr

8 thoughts on “ADPKD Information Event

  • Thanks for posting the links to the various presentations. Rather a shame that there wasn’t a slide show covering the excellent talk by MRI transplant surgeon David Van Dellen.

  • I also attended ADPKD event on Saturday. I had a Kidney transplant 2 years ago and also a Liver transplant 16 years ago but learned a lot more on Saturday than I have over the past 36 years attending Renal Outpatients. Thanks to Tess Harris for organising the event and would encourage anyone with PKD to attend one of these events. The PKD Charity will post on their website when any others are arranged.

    • Thanks for your comments Marion, I did raise the subject of better information for patients at the afternoon workshop “Designing the perfect PKD clinic” as I firmly believe that being well informed will help us prepare ourselves for whatever PKD throws at us. This is true of any chronic condition, kidney related or otherwise.

      I may develop this theme in my next blog 😉

  • The ADPKD Event opened my eyes to the large number of patients with this condition. I consider myself extremely fortunate not to be affected by this terrible condition. Having met Rob and Jack in person, I find you both to be a great inspiration to us all with your grit and determination to succeed in an area of CKD that can now give us all in the words of Rob “Optimism and Hope” as the research makes “Progress” in leaps and bounds. Now that this event has given all who attended a glimpse of what the current research and development is, it will be interesting to see what happens next, as I understand there are great strides being made in stem cell research to grow a matching kidney without the defective gene sequence and bring this horrific condition to an end.

    • Thanks Stuart for your kind words and update on stem cell research. I was particularly moved at the event by the short talk by Tess Harris’s sister whose description of the previous 12 months of her life demonstrated just what a roller coaster life with ADPKD can be.

  • I find this blog highly informative for all patients with the disease ADPKD, as a patient who had my renal transplant 22years ago this coming 6th December 2013, and with a family that has had our fair share of tradgedy and triumphs because of this. It is amazing the progress we have made over the last few decades by our wonderful Medical & Surgical teams. I am proud to say I once had the opportunity to serve as a Senior Operating Department Practitioner in the Theatres in Manchester Royal Infirmary and Hope Hospital, Salford. I was also Organ Retrieval Link Officer ( Anaesthetics ) at MRI and worked in the Renal Transplant Theatres . Life is starting to look much more positive with all of these advances, as I still have grandchildren and other family members who suffer from this dreadful disease.

    Bravo to all concerned, Jack Polson Retired.

    • Thanks for your comments Jack. In my estimation there were over a 100 people attending the event each with a tale to tell. One couple with a teenage son who is already suffering travelled down from Scotland such was their thirst for information.

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