AS THOSE with multiple sclerosis mark World MS Day on May 27, Wolumla resident Irene Trezise (Maddern) is preparing to travel to Russia to embark on a procedure she and her husband Wayne hope will stop the progression of her disease.
Irene was diagnosed with relapsing multiple sclerosis (MS) in 2005 and her condition has worsened in the last few years.
With no cure for MS, those afflicted use drug therapies to ease specific symptoms and slow the progression of the disease by shortening the attacks.
However, for Irene the severity of the side effects has outweighed any benefit from using these drugs.
She has had some success with an antibiotic regime advocated by Newcastle phlebologist (vein specialist) Dr Paul Thibault.
“It’s not a cure, but what it’s done is slowed Irene’s progression of the disease so it has bought us valuable time we didn’t have,” Wayne said.
“It’s the difference between Irene being in a wheelchair at this point and still walking, although she has now plateaued with this treatment.”
Three months ago, Irene and Wayne were watching Channel 9’s 60 Minutes when they saw a story about a Queensland nurse with MS, Kristy Cruise.
Ms Cruise underwent hematopoietic stem cell transplant (HSCT) at the Moscow clinic of Dr Ivan Fedorenko.
Since her treatment in Russia, Ms Cruise has publicly advocated this form of treatment and believes it is responsible for halting her MS.
She said her cognition has returned fully and she no longer requires a mobility device.
“It was a like looking in a mirror, from the age Kristy was diagnosed, her symptoms, to her family, to the desperation she felt because other treatments weren’t working,” Wayne said.
“On one hand it was hard to watch, on the other it was like a door opening.
“We contacted Kristy straight away and through her made contact with Dr Fedorenko.”
Irene is one of 60 Australians who have been accepted into the treatment program with Dr Fedorenko since Ms Cruise’s story went to air.
The treatment is costly but Wayne said he was ready to re-mortgage their home to get Irene there.
However, when close friends heard what the couple were planning to do they encouraged him to seek support from the community.
A donation campaign on the crowdsourcing website gofundme has already raised $10,000.
Friends have organised fundraising events at Bega's Grand Hotel on July 12, Wolumla Hotel on August 16 and a gala day at Merimbula's Shortpoint Caravan Park coordinated by Andy and Lynn O’Donnell from the Cheeky Mango on September 6.
The couple have dealt privately with Irene’s illness, but the decision to have treatment overseas has forced them to reveal her diagnosis.
“Nobody really knew, and if I needed a cane I would just tell people my foot was sore or something,” Irene said.
“I don’t want anyone’s pity and I don’t want to be defined by MS.
“Our kids Tanisha, Tegan and Dylan didn’t even know until I decided to go to Russia, we have just always told them Mummy’s legs were a bit sore.
“I need to do this for them, I need to be able to get out and play with them and do more, I need twenty more years to be there for my kids.”
The family would like to thank everyone in their community, including strangers whom they have never met, for the support they have received so far.
“We are so deeply touched,” Wayne said.
For more information go to www.gofundme.com/8hczaw or search for Wayne Irene Trezise on Facebook.
A fundraising account has also been set up at St George Bank in Irene’s name for those who wish to support her journey, contact the Bega or Merimbula branch for details.
What is HSCT?
HSCT stands for hematopoietic stem cell transplant.
The treatment involves harvesting stem cells from the patient’s blood or bone marrow.
The patient then undergoes chemotherapy to destroy their immune system before the purified stem cells are put back.
“This reboots the immune system and they restart as a new born baby, requiring Irene to go through an isolation period and then retake all her immunisation shots again as a child does,” Wayne said.
HSCT is used for the treatment of some cancers in Australia but is not used for the treatment of MS.
However, advocates such as Kristy Cruise believe the procedure stops the progression of disease.
“It’s an accepted treatment for the past decade internationally but not here in Irene’s home country,” Wayne said.
MS Australia released a statement following the 60 Minutes story and another separate patient account aired on Channel 7’s Today Tonight.
“The current issue with this treatment however is it is still in its very early stages,” a spokesperson said.
“It is an intrusive procedure with many high-risk steps and includes high doses of chemotherapy which can knock people around considerably.
“Currently, there is not significant evidence to determine if the treatment is safe, or that identifies which people actually benefit from this treatment - as results are varied.”
Wayne hopes talking about Irene’s MS and her plans to have HSCT in Russia highlight current treatment protocols in Australia.
“I’m not suggesting HSCT is for everyone with MS, but why is it not an accepted procedure in our country for those who want it?” he said.
Trials have been conducted in WA, ACT and currently at St Vincent’s Hospital in Sydney.
“Irene would not have been accepted into St Vincent’s because the criteria states you have to have exhausted all other drug options and have highly aggressive MS, we did apply but have heard nothing back,” Wayne said.
“We can’t and won’t damage Irene’s health with all the drugs and we don’t have time to let her deteriorate any further, she wants to be healthy now for her children.
"Life is too short.”