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Living with a rare disease

For some children with a serious health condition, one of the biggest battles they will face is finding a diagnosis.  When a health condition is rare, it can take a number of years, and assessed by multiple doctors before a diagnosis can be made.

According to the Journal of Rare Disorders it takes on average 4.8 years from symptom onset to accurate diagnosis for a patient aged 0-20 years.  They will see on average 7.3 physicians before receiving an accurate diagnosis.

Meanwhile parents have to manage their child’s condition daily while strongly advocating on behalf of their child to find the answers they so desperately need. When a diagnosis is finally made, the hard work does not end there.  There will often be little known about the disease and how best to treat it.  Parents find themselves becoming the expert in their child’s condition, as doctors will often have had little to no experience with the rare disorder.

The paradox of rarity

In New Zealand there are over 300,000 people with a rare disorder, higher than those with diabetes.  Rare Disorders NZ CEO Dr Collette Bromhead says “there are 5000 to 7000 different rare conditions known.  While individually these disorders are uncommon, collectively they affect 8% of our population. This is the paradox of rarity”. It is estimated that 72 % of rare diseases are genetic in origin and 50% of the people affected are children.

For most health conditions there will be a support organisation in NZ that families can turn to such as Child Cancer Foundation or HeartKids.  However for a rare disease, the child may only be one of a small handful of individuals that have the condition in NZ or even worldwide.  Finding connections and support from people that understand what the families are going through can be really hard.  Rare Disorders NZ is a charity organisation that supports people living with a rare condition.  They help to connect people across the country, provide information to medical professionals, and advocate for more funding and better research.

True Colours Support

The support we provide at True Colours covers all serious health conditions.  We support a number of families that have a child with a rare disorder.  You can read about one family’s journey here.   Charlotte and Lachlan Smith have a rare metabolic condition.  Their condition is still unnamed and are the only two people in New Zealand with it.  Their mum Jenna says “our family is probably quite different to many, but it has become our new normal”

Parents tell us they feel worn down by other’s not comprehending how challenging it is when caring for children with rare diseases.

“I still feel outside of it, because of my daughter’s rare condition.  It’s just the rare thing, you get the diagnosis and think, what the hell do you do now… what I am trying to say, you just have this bubble, where you have these rare things and always just seem to be on the outside of it all”. Client Quote PhD

 These feelings of being different and not “normal” are also felt by the child living with a rare disorder.  The support True Colours provides to children helps them to feel accepted and valued for who they are, with their medical condition.

 “Even though I have a medical condition, the counsellor never treats me differently… one of the hardest things is being different to others”.Client Quote 

Rare Disease Day

Rare Disease Day is held on the last day of February each year, helping to raise awareness for those living with a rare condition. True Colours Children’s Health Trust acknowledges the great work that Rare Disorders NZ does across the nation.  We honour the  families who are caring for their children with rare disease or those who have had a child die from a rare disease.


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