Gemma and McCauley Stratford (left), Governor-General Dame Cindy Kiro, and Kiwi CRPS board member Debbie Beazley.
Gemma and McCauley Stratford (left), Governor-General Dame Cindy Kiro, and Kiwi CRPS board member Debbie Beazley.
Debbie Beazley is delighted a new booklet is available for parents who have a child with a rare disorder.
“It’s hard enough when you’re an adult trying to navigate the health system when you’ve got a rare disorder, but when you’re a parent who has got a child, there are a lot more struggles and it’s a lot of harder to navigate.
“Rare Disorders New Zealand decided that by putting together this guide, it would make things a bit easier for parents and show them the pathways that are available to them so it isn’t an individual struggle.”
Beazley is a board member of Kiwi CRPS Charitable Trust, which represents people who have complex regional pain syndrome (CRPS), and is the trust’s representative for Rare Disorders NZ, which created the booklet, Raising A Child With a Rare Disorder.
The booklet launch took place at Government House and was hosted by Governor-General Dame Cindy Kiro, who is the patron for Rare Disorders NZ.
“He’s a very impressive young man who has done incredibly well with his journey with CRPS,” Beazley said.
“He is very positive and living very well with it [CRPS], which is what we all strive to do.”
She said there was “a wonderful atmosphere” at the launch and praised Dame Kiro for her warmth and interest.
“It was very special.”
McCauley Stratford receives a pin from Governor-General Dame Cindy Kiro.
Beazley, from Raumati Beach, got CRPS 10 years ago after rupturing her left calf muscle while rock‘n’roll dancing, leading to a blood clot.
She was alarmed when her foot continued to swell, was going purple/blue, and was ice cold.
“Because I had been a dispensary technician, with 31 years of experience, I kept saying, ‘This isn’t normal and shouldn’t be happening six months down the track’, but I was told it was fine.
Diagnosis and awareness is the key thing for anyone with it.
“It took a year before I was sent to a specialist, with the foot still swelling, ice-cold and numb, and they didn’t know what was wrong.
“It then took lots of specialists, lots of me throwing wobblies, and tests coming back normal for what they were looking for.
“It wasn’t until I saw a locum, four and a half years later, by which stage I could hardly walk, and she took one look at me and said, ‘You do know you’ve got CRPS, don’t you?’ And I said, ‘What’s that?’
“From there I was able to get the right medication, I was able to get educated and get to a specialist and have the right type of physio, and eventually get to a pain team and start pain management, which then makes a world of difference.
“Diagnosis and awareness is the key thing for anyone with it.”
Beazley said CRPS was nerve pain initially and was “ranked as one of the highest pains around”.
“It’s 24/7 — it goes up and down the scale — but you’re never without the pain.”
She needs a crutch to help with walking, gets chronic fatigue, and has tremors and brain fog.
“I injured my calf, but I have CRPS in almost my whole leg now.”
She said CRPS started with something minor like a sprain or a break but ended up being life-changing.
“All the things that shouldn’t be happening after the injury has healed.”
Beazley was delighted with the booklet.
“I struggled [with a rare disorder] even with a medical background, and it’s daunting when the medical profession you’re dealing with on a day-to-day basis don’t understand rare conditions because they don’t come across them very often.
“Often you have to push and find a way through it yourself.
“I can imagine what it’s like for a parent who’s dealing with a child, and a rare condition.
“Having a guide is just fantastic for them, and will take away a lot of stress from a parent.
“There’s so much in the guide and it’s really useful information.
“And it helps them to know that there are so many support groups out there, so they can go to Rare Disorders NZ and be sent to a support group that is especially for that rare disorder that they’re dealing with, but they can also go to Rare Disorders NZ for help and assistance as well.
“The guide also gives so much practical advice on how to navigate what they need to know and how to look after themselves, too.”
Rare Disorders NZ connects people to rare disorder groups and information and helps people navigate the health system.
Rare Disorders NZ is made up of more than 140 disorder-specific support groups [including Kiwi CRPS] and provides a strong, unified voice to advocate for a healthcare system that works for those with a rare disorder.
