homepaddock posted: "Each rare disorder is rare, but it's not rare to have a rare disorder: . . . It's not actually that rare to have a rare disorder. But there's no official rare disorder register so it's difficult to know exactly how many people are actually affected. Chr"
. . . It's not actually that rare to have a rare disorder.
But there's no official rare disorder register so it's difficult to know exactly how many people are actually affected. Chris Higgins, chief executive of Rare Disorders NZ, says they tend to be more conservative with their figures, and the number could actually be higher.
My sons had degenerative brain disorders - so rare they didn't get a diagnosis.
"The other thing that happens is that the number of rare disorders increases anyway as we understand that what we might have considered to be a common condition is actually made up of a number of sub-conditions, some of which will be rare."
Ovarian cancer isn't rare, it strikes about one woman in 70, but some of its subtypes, including low grade serous ovarian cancer, with which my daughter is afflicted, are rare.
March is Rare Disorders Month, an opportunity to acknowledge and celebrate the approximately 300,000 New Zealanders who have something that makes them a little bit different.
But the latest survey from Rare Disorders New Zealand paints a continuing picture of isolation, lack of timely and accurate diagnosis, and poor treatment. . .
Lack of timely and accurate diagnosis and poor treatment options are common for conditions that aren't rare too. One of those is ovarian cancer and one reason for that is low awareness.
Many people are familiar with Movember, Daffodil Day and Pink Ribbon events but last month was Ovarian Cancer Awareness month and it largely went under most people's radars.
Every woman should be familiar with ovarian cancer symptoms which include bloating; eating less and feeling fuller; abdominal, pelvic or back pain; needing to pee more, or urgently; a change in bowel habits; and fatigue. They are vague and could be the sign of other less serious conditions but if they persist for more than a couple of weeks, you should see your GP, and keep going until you get a diagnosis.
Ovarian cancer isn't detected by cervical smears. Diagnosis requires a CA125 blood test and an ultra sound. The earlier a diagnosis, the better the outlook.
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