Kilimattjaro

My journey to reach the roof of Africa


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Talking To Myself

motivationletterJust a few days before we leave and so as you might expect the trip and the challenge ahead is never far from my thoughts. I feel good about the preparations and training I’ve done – my fitness is better than it’s been for many years and my weight is significantly lower than a year ago. I’ve also obsessively read and research anything I can find on climbing Kilimanjaro, trekking gear, hiking skills and high altitude physiology /medicine. I’m both exited (like a kid waiting for Christmas type excited) yet wondering what lies ahead. I know it’s likely to be tough in places and it’s the personal challenge to see what I can do that played a part in my first thinking about “doing Kili”.

Yesterday the team, our families and I did a local short walk and then shared a meal and drinks in the evening sun. It was great for us all to spend some time relaxing and talking about the trip ahead of us. Today I’m off for another IHE session and tomorrow is my last training session in the gym. I’m then into resting until we depart on Friday – the sports performance professional’s call this “tapering” – I call it taking it easy and eating loads of carbs before the climb 😉

The other aspect of my Kilimanajaro challenge was of course to raise funds and awareness for PSC Support. I’ve been delighted, amazed and humbled at people’s good will and generous donations – so much that I have had to rise the fund raising target couple of times. Jeff in our team has also been fund raising too and between us we’ve already raised in excess of £6,000 which is absolutely fantastic. Thanks to everyone who has helped make that happen. Of course if you’ve not yet donated there’s still time to help and every single penny will go to good use to help those affected by PSC.

Meeting my half of the sponsorship bargain will be a significant point of motivation when I’m on the mountain. To help reinforce my commitment and in an attempt of some amateur psychology I’ve produced a Motivation Letter to myself to remind me why I’m doing this and who’s supporting me. I’ll be taking a laminated copy with me in my back pack and plan to read it daily. So if you’ve sponsored the climb you’re going to the summit with me both in my grateful thoughts and on my motivation sheet. I’ll produce a final one on Thursday night before as I pack so why not get you name on there by sponsoring me?

This week’s main challenge will be how on earth do I pack all my gear and keep within my weight limits for the airline and mountain porters? I’ll write up a separate blog on my Kili Kit list and packing – it’ll be interesting to see what I actually find useful vs all the stuff I’d like to take.


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Pulling the Strands Together

DNAIn the largest ever study of PSC a global team of investigators have studied the genes that contribute to why someone develops PSC. This work is of huge importance to all interested in developing new therapies for patients with PSC, and has understandably generated a lot of excitement for patients and clinicians.

First and foremost it reflects an enormous effort on the part of patients and investigators to collect DNA samples from so many people with PSC across the world.  This in its own right demonstrates how it is possible to make progress in understanding a rare disease, by multiple groups working together.  It is hoped this will continue in the future, with patient organisations such as PSC Support.

Secondly the genetic findings are striking, for identifying new immune genes that are associated with the risk of developing PSC. Collectively with prior genetic studies, this latest work contributes enormously to the slow but steady effort to piece together the puzzle of why a patient gets PSC/colitis.  If medical researchers can better understand this, then it is hoped they can better design new therapies to treat the disease more directly.  Efforts will continue to discover more genes associated with PSC, but more importantly to model experimentally how they actually contribute to PSC itself.

If you’re interested, the genetics paper can be accessed at Nature Genetics. A brand new state of the art review will also very soon appear in the medical journal The Lancet on PSC, which brings together all the latest advances in disease understanding.

We’re still some distance from proven PSC therapies or a cure but it finally feels like there is real momentum and increasing understanding of the mechanisms of this horrible disease.


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PSC Research and Support

QEH_pscLast Saturday I was volunteering at a PSC Support meeting at the Queen Elizabeth Hospital in Birmingham.  These face to face meetings allow people affected by PSC who often feel isolated and their condition and symptoms misunderstood to meet with others in the same situation. Knowing that they’re not alone can have the most remarkable positive effect on PSC suffers and their families. I remember when Martine went to her first meeting and she came back with a far more positive outlook after talking with someone who had gone through a liver transplant after having PSC and was doing really well.

The other part of these meetings is bringing together medical experts and PSC researchers to share their knowledge and deliver updates on their work. This time we had presentations around Liver transplantation in PSC and new scanning techniques which could dramatically improve Liver diagnostics and reduce the time of clinical trials. A lively Q&A session followed – and this was very welcome because you typically don’t get that kind of time and access to a consultant when attending your regular clinic appointment.

We also received an update on medical research on PSC and this was very exciting. There’s genetic profiling research due to be published later this year which should identify many of the genes associated with PSC – in fact it may even suggest that PSC is a cluster of similar but slightly genetically different conditions.  That kind of insight can really help clinical research into possible therapies. Another enticing research strand in the UK is looking at the autoimmune nature of PSC and seeing if existing drugs can be targeted to halt and even potentially reverse the effects of PSC. Of course all that takes time and money and that’s one reason that I’m fundraising for PSC Support – to enable them to make the research grant contributions that help medical science move closer to understanding the mechanism of PSC and to find effective therapies.

Events like last week both inspire me when I hear the various “PSC’ers” stories and give me hope when I see the research direction and energy.


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Donating Life

FTHPSC is unpredictable. Every sufferer experiences different symptoms which progress at different rates, some rapidly, some more slowly. In progressed cases Liver transplantation can often be their last chance.

Here in the UK there was a recent media campaign “from the heart”  which promoted organ donation.  As part of that campaign there were two videos about PSC suffers both of whose families happen to have also been supported by my chosen charity PSC Support. Take a moment to hear their stories – they’re both an inspiration and motivation to me.

Craig – a young family man who recently had a liver transplant.

Jade – a young women whose PSC has progressed to the point where she needs a new liver. Jade’s father was an organ donor after his unexpected death so her family has a unique perspective of both sides the subject.

Would you accept a donated organ if your life depend on it, or if a family member’s did? I suspect the vast majority of us would say yes –  I would! Signing up to be an organ donor doesn’t mean you any more likely to die. In fact you’re more likely to need a donor organ than to donate one.

When Martine was diagnosed with PSC and I began to educate myself about the condition I made sure I signed up to be an organ donor in the event of my death.  I’ve met many people who have gone through a liver transplant and the wonderful gift it is for them and their loved ones. Please consider registering to be an organ donor too and make your wishes known to your family.


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It’s not all about booze, blow outs and acting recklessness Sally

01-george-best-drinking-031810-lgThis month Sally Davies, the UK’s Chief Medical Office published her first annual report. In that report she highlighted the increase of Liver Disease in the UK and how this is linked to life style choices and behaviors such as alcohol, obesity and infection.  There was a lot of national media coverage generated.

Whilst people undoubtedly need to be educated  on the topic so they can make informed decisions Ms. Davies’ comments fail to include that some liver disease isn’t self-imposed – it just happens. My concern is that by framing liver disease in the media as “self-inflicted” that the public then reduces is sympathy for the cause both in terms of charitable support and of registering to be organ donators in the event of their death.

There’s a massive shortfall of livers for transplant in this country and many people die whilst on the waiting list. PSC, the disease my wife suffers with isn’t caught or incurred due to lifestyle choice – it just happens. They don’t know why and there’s little to no funding for research. There are plenty of other “non-lifestyle” liver diseases out there too.

There’s a stigma to Liver disease – I regularly hear people with PSC act as if they have to justify their illness “it’s not because of alcohol or drugs” etc.  I think that our Chief Medical Officer has just helped reinforce that stigma and ultimately risked damaging support for Liver disease sufferers and charities in the UK. Next time Sally please thinks about the broader context and communicate more effectively!

Apart from helping PSC Support, my chosen charity there’s something else you can do though – register to be an organ donor and discuss it with your next of kin so they don’t have the burden of a tough decision at a difficult time. Most of us would want an organ transplant if we needed it yet so very few us register to donate…


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Boom!

Martine, my wife suffers from Primary Sclerosing Cholangitis (PSC), something that she once likened to “living with a time bomb in your chest and not knowing if and when it’ll go off”.

PSC is a rare disease that has no known cause, cure or treatment. It causes the bile ducts both inside and outside the liver to become scarred, narrowed and eventually blocked. As more ducts become blocked, bile becomes trapped and damages the liver, leading to cirrhosis and liver failure.

PSC Symptoms often include:

•    Chronic, debilitating fatigue

•    Severe, uncontrollable itching

•    Dangerous infections of the bile ducts

•    Pain in the body’s Upper Right Quadrant

•   Jaundice

PSC sufferers frequently have associated autoimmune diseases, most commonly inflammatory bowel diseases such as Crohn’s Disease or Ulcerative Colitis. As well as all that they also have a significant increase in the risks of bowel, liver and pancreatic cancers. Basically, you just don’t want to get PSC.

Martine was diagnosed in 2007 with PSC when our daughter, Sophie was 15 months old. We’d never heard of PSC and within Singapore (where we lived at the time) there were no other sufferers or meaningful medical experience of the disease.  Our family went through a very difficult period where our outlook was unsure and “Googling” PSC just delivered inconsistent, depressing information and a bleak prognosis. PSC Support gave us information and support to help us all come to terms with Martine’s illness.

PSC Support is a UK charity, totally run by volunteers, that helps people affected by PSC, including sufferers themselves, and their families. PSC Support makes a real difference by providing  information and support to those affected by PSC, promoting PSC and organ donation awareness, developing effective partnerships with those involved with medical treatment and help support vitally needed research into PSC.They’re a small organisation that totaly “punches above its weight”.

We know at first hand the how frightening and isolating a diagnosis of PSC is for both the sufferer, their family and friends and the difficulty associated with having an uncertain future. That’s why Martine and I both volunteer for PSC Support and why I’m going to use my Kilimanjaro climb to raise awareness and funds for PSC Support. As a cause it simply couldn’t get any more personal for my family and I.