PNH supporters participating in Lake Taupo Great Lake Relay
Relaying awareness of an ultra-rare blood disease
PNH supporters participating in Lake Taupo Great Lake Relay – Saturday, February 23, 2013
Stoic Matamata resident, Natalie, 32, has been cheating death for the past five years.
Diagnosed with an ultra-rare, life-threatening blood disease in 2007 that claims the lives of one-in-three patients within five years of diagnosis, Natalie will be competing in the Lake Taupo Great Lake Relay this Saturday, February 23, to raise public awareness and understanding of her incurable illness – Paroxysmal Nocturnal Haemoglobinuria (PNH).
Having endured years of excruciating abdominal pain, chronic fatigue and other life restricting symptoms, Natalie will be joined by a team of 17 supporters, including fellow PNH patients, family and friends, striving to complete the 155 kilometre annual relay around Australasia’s largest lake, Lake Taupo, in her support.
“I’m participating in the Great Lake Relay to increase community awareness of this progressive disease while highlighting our PNH association’s current fight to secure subsidised access to the only life-saving treatment for our disease,” said Natalie.
“People with PNH should be given the right to live their lives to the fullest.
“Without the treatment, Soliris, people will die.” Natalie said.
“Should money be the only reason that’s preventing PHARMAC from funding this treatment, then I simply don’t understand how they can put a figure on someone’s life.
“If the government can’t save the life of an average Kiwi girl, then that’s just not good enough,” said Natalie.
Natalie’s sister, Katrina, 29, from Palmerston North, will be joining her on the Walk. According to Natalie, her mother is the only one who has an intimate understanding of her disease.
“Mum is really the only person who truly understands the exhaustion and excruciating pain that I experience with PNH.
“There are some nights when I just can’t sleep because I’m in so much pain,” Natalie said.
Natalie’s parents, Wendy, 59 and Wayne, 59, from Palmerston North are campaigning vigorously to save their daughter’s life.
“Being the parents of a PNH sufferer is not easy. You never know what’s going to happen tomorrow.
“A mum is only as happy as her unhappiest child, and I live every single day thinking about her,” said Wendy.
“Natalie’s health could flick into chronic deterioration mode any day and she could possibly die.
“I can’t live with that. I will fight with every ounce of my being to get this life-saving treatment funded,” Wendy said.
Artist, single father and founder
of the PNH Support Association of New Zealand (PNHSANZ),
Daniel, 32, Auckland, will be joining Natalie for the
Great Lake Relay this Saturday, to highlight the
current plight of the less than 20 New Zealanders living with PNH.
“Members of our PNH association are setting themselves a huge challenge by participating in this event.
“We’re also demonstrating our resolve to secure subsidy for the only effective treatment for PNH, a decision which has been sitting with PHARMAC since February 2012,” said Daniel. more#
Daniel, who after years of experiencing chronic fatigue was diagnosed with PNH in 2010, became aware of the gravity of his disease in 2011, when it almost claimed his life.
“Complications relating to the disease almost claimed my life last year. I’ve since endured a slow and painful road to recovery.
“Because PNH is an ultra rare disease, it’s difficult to show or tell people what it’s about, or what’s going on, because it all happens internally. It can be incredibly isolating, “Daniel said.
“Due to the constant fatigue, there are times when it's an enormous effort to keep up with my six-year-old son, something which really concerns me for without treatment, I know that my symptoms will only get worse.”
On average, PNH affects people in their mid-30s, however 10 per cent of all people living with PNH start developing symptoms before they’re 21.
The disease often goes unrecognised, with diagnosis sometimes taking more than 10 years.
“PNH can trigger various health complications including fatigue, poor physical function, fatal blood clots, chronic kidney disease, anaemia, stroke, heart failure and vital organ damage,” said Daniel.
“As the disease progresses, it makes it increasingly difficult for patients to remain active due to the rapid and ongoing destruction of red blood cells.
“While I’m clearly concerned for my own health, the youngest patient in our association is 11 years old and it seems terribly unfair to allow her to suffer unnecessarily,” Daniel said.
According to Daniel, the treatment is cost-prohibitive without Government subsidy.
“The situation is really grave. This disease is deadly and our members’ health is deteriorating, sometimes irreversibly, as we wait for access to a life-saving treatment which is sitting on the shelf.”
“This Saturday we’ll be encouraging New Zealanders to sign our association’s petition for life by visiting www.pnhsanz.org.nz,” said Daniel.
“Natalie’s employer, Matamata-based contractor, J. Swap Ltd, will be providing a support van for the team participating in this event.”
About the PNHSANZ
The PNHSANZ was established by Daniel and other concerned New Zealanders in 2012 to fight for access to the only effective treatment available for PNH. For more information about PNH visit www.pnhsanz.org.nz
PNH is an ultra-rare, progressive and life-threatening disease known to affect less than 20 New Zealanders. PNH is characterised by ‘haemoloysis’ or the destruction of red blood cells, which can cause a variety of major health problems such as the formation of blood clots, high blood pressure and damage or failure of organs including the brain, liver, gastro-intestinal system and kidneys.
Various symptoms, including abdominal pain, difficulty swallowing, poor physical function, shortness of breath, and debilitating fatigue, can also interfere with the quality of life of those living with PNH.
Estimates suggest one-third of patients with PNH do not survive more than five years from the time of diagnosis.
the Great Lake Relay
The annual Great Lake Relay around Lake Taupo is renown as the best team-building exercise of all time, and the most social and scenic event in New Zealand. Each year, around 4,500 participants cover the 155 kilometre course. Each team comprises between 10-to-18 members, either running or walking the entire distance around Lake Taupo.