President’s Pen
President’s Pen By Kim Porthouse
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In this edition of CHAT21 the theme is dual diagnosis, meaning a diagnosis of Down syndrome and at least one other condition. We often think of dual diagnosis as meaning a diagnosis of Down syndrome and Autism, and this is one condition that around 20% of individuals with Down syndrome do have. However, for many members, their child with Down syndrome has a dual diagnosis of Down syndrome and something else. It may be one other or several other conditions such as visual impairment, hearing loss, hypothyroidism, ADHD, coeliac disease, leukaemia, or a heart or gastrointestinal defect to name a few. I’m sure this edition will hold something of interest for most. In the last edition, I spoke about Brendon and how he has a dual diagnosis for Down syndrome and Autism. I also spoke of the NZDSA’s new resource and the online forum the NZDSA is hoping to foster. It is exciting to see the development of these to help support those of us who live this particular journey. The new resource provides excellent information and an online forum has the potential to be wonderfully supportive, provide
interesting insights, and be so valuable to not only those of us who have been navigating this path, but also to those who are seeking information and support as they begin such a journey. There is a wealth of knowledge and experience in our community, so my hope is that this can be tapped into and shared so that the road is easier for those to come. The good news is that there is now more recognition of this particular dual diagnosis and more research informing both parents and professionals alike. As mentioned above, for some, their family member may well have several diagnoses, just as my son Brendon does. In my experience, they fortunately don’t all hit at once! For me, my journey included Brendon being born with a heart defect that required open heart surgery at 6 weeks of age. He still has leaky heart valves which require monitoring but, overall, he thankfully hasn’t looked back physically since the surgery. After that, it became clear by the age of two that he needed glasses, then, at around eight years he was diagnosed with coeliac disease, and at around ten years with hypothyroidism.
