WFH NETWORK

Challenging perceptions

Adam Jones, WFH Contributing Author

Saturday May 2, 2015.

Put that date in your calendar.

Done it?  Good, now I can tell you why you needed to do that.  Two fellow people with hemophilia performed some amazing feats of physical, emotional, and mental stamina; and one of them will be going all out for some time to come.

The first feat to be attempted was the World Record for cycling’s ‘perfect hour, i.e, how far one can cycle in 60 minutes.  This was at the Velodrome in Manchester, UK.  Professional cyclist and person with severe haemophilia A, Alex Dowsett, took on this momentous challenge It is his goal to be the greatest cyclist he can be and at the same time change the perceptions that society has about people with hemophilia.   He believes all people with hemophilia can and should be able to compete at the same level as other professional athletes, and he makes a good point, you just have to look at the outcome of his attempt.

The perfect hour dates back to 1876 when American Frank Dobbs managed to cycle 26.508 Km on, believe it or not, a penny farthing (see image below).  In 1893 Henri Desgrange (the same man who organized the first Tour de France) set a new record.  This prestigious record in cycling has constantly been challenged and bettered over the years and on February 8, 2015 Australian Rohan Dennis became the record holder with a distance of 52.491 Km.  Yes, that’s not a typographical error, it really does say 52.491 Km; and yes, it was all done in 60 minutes.

That last paragraph was correct as of May 1, 2015, because as of May 2, 2015, (yes, you’ve guessed it) Alex Dowsett, person with hemophilia and aerodynamic powerhouse, smashed it.  He now stands as the present title holder with an amazing distance of 52.937 Km in just 60 minutes.  Later this year a number of other attempts to break this record are scheduled, including by the previous title holder, Rohan Dennis, and Sir Bradley Wiggins.  On June 7, 2015 Sir Bradley Wiggins went on to break Alex’s time, but fret not because Alex has not ruled out an attempt to regain the title.

STAGE FIVE OF THE 2011 CASTILLA Y LEON

But didn’t I say that there were two people with hemophilia who had performed amazing feats of endurance?  I certainly did.  The second is Carl Sanderson, he’s a 41 years old from Washington, U.K. The small town of Washington has nothing to do with the American state or Capital but is the ancestral home of the first president of the USA, George Washington, but I digress.

Carl has a mission similar to Alex Dowsett.  He also wants to change the negative perceptions that surround hemophilia and the people that live with it, but Carl is not a professional cyclist, he’s a security guard and former doorman.  Okay, I heard that sharp intake of breath, and I can imagine you shaking your head in near disbelief at his chosen professions, but that’s just the thin end of the wedge.

Carl is a calm, well mannered father of two.  He is easy to talk to and loves his fish, but above all else, he’s a ‘finisher’.  You see on May 2, 2015 Carl began his challenge to enter and complete the Tough Mudder (If you haven’t heard of it, I suggest you check the website here https://toughmudder.co.uk/  – it’s insane).  The Tough Mudder is a 10-12 mile, military style assault course which tests you mentally, emotionally, and physically.  There are giant pools of ice water that you must dive into; water courses that have live electrical wires dangling precariously above ready to electrocute the competitors; greased monkey bars that you must traverse; 12 ft walls to be scaled, and many more similar tortuous and demanding obstacles.   But Carl has no intentions of completing this just once.  He repeated it the next day, Sunday May 3, 2015, and aims to do so a total of 16 times this year – all in only 8 weekends ending his incredible Mudder marathon on September 27, 2015.  After this, you would think that Carl deserves a break?  Upon completion of this gruelling tour of UK Mudders, Carl is then hoping to take a well-earned trip abroad to Las Vegas.  Not for a fun trip to Caesars Palace but to compete in one more Tough Mudder competition – the World’s Toughest Mudder (WTM).

This is even more insane than the other sixteen that he’ll have completed by this time.  The WTM is 8 km long and filled with the same body-breaking obstacles that regular competitors have come to expect, but the really bad part is that competitors who enter this event must keep going round and round the course for 24 hours.  The winners are decided as the male and female competitors who complete the most circuits within the 24 hour period.  Should he succeed, Carl would be the first person with hemophilia that we know of to compete in and (hopefully) finish the WTM.  You can follow the exploits of Carl’s Tough Mudder challenge by going to his Facebook page ‘Bleeding Tough Mudder’ (https://www.facebook.com/bleedingtough).

Just writing about these two inspirational people has me feeling as though I should be injecting some of my factor IX in case I begin bleeding from psychologically induced trauma.  How different is the world of hemophilia today?  I mean, look at Alex and Carl, they are pioneers of a future for young people with hemophilia that I only ever dreamed about when I was a child growing up, and never really thought for one moment that it would, or could, become a serious reality, let alone that it would happen in my lifetime!  They are showing the world that living with hemophilia does not mean limitations to life, as it did just a few years ago.  With all the recent advances in treatment, the worlds of sport and employment are opening up, and with the right support from hemophilia centre staff, the only barriers to what you can do and achieve are the ones you place upon yourself.

Please don’t take this as a one-size-fits-all, rose-tinted view of the realities of living with hemophilia – I’m much more pragmatic than that.  I have lived with severe hemophilia B for 43 years and experienced my fair share of stigma, secondary complications and infections, including lower and upper limb arthritis, hepatitis B, hepatitis C, and so forth (I’m sure you get the picture), so I understand firsthand the day to day difficulties and constant pain that must be endured by so many.  That said the same may not have to be true for future generations.  Alex and Carl really are trail blazers in a fast moving landscape of hemophilia treatment and care, and I think we will be seeing more hemophiliacs following in their muddy footsteps and cycle tracks.