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Pneumonia Vaccine Funding I t is important our members stay well, particularly through the winter months. It is recommended that individuals with neuromuscular conditions receive vaccination for prevention of pneumococcal diseases, such as pneumonia, due to increased risk of not only becoming unwell but also the increased risk of complications if there is an inability to cough and clear the airways effectively. Pneumococcal vaccines are fully funded for children under 5 however government funding is not generally available for older children and adults. For this reason, you may not be eligible to receive a funded vaccine through your local general practice (GP). Because cost is a barrier to having the vaccine, MDANZ has a reimbursement programme available to members who have a neuromuscular condition. MDANZ will reimburse you the cost of receiving the Pneuomvax 23 vaccine at your local GP. Simply go online to complete the reimbursement form with your details, attach your receipt and you will be reimbursed within five working days. www.mda.org.nz/What-We-Offer/ Pneumonia-Vaccine-Funding multidisciplinary care aimed at early detection of complications as they arise. This includes frequent blood pressure checks, annual ophthalmic assessments, monitoring for bone growth abnormalities such as scoliosis, and assessment for precocious puberty in children. Monitoring school progress and identifying cognitive and behavioural difficulties promptly can lead to earlier educational intervention and support. Adults should see their GP annually for blood pressure monitoring and there should be a low threshold for thorough investigation of hypertension as there is an increased risk of not only essential hypertension, but also renal artery stenosis and rare endocrine tumours called phaeochromocytomas. Educating families with NF1 about their condition and what to look out for is an invaluable step in self-advocacy. Anyone with NF1 should report any rapid change in their lumps, or onset of pain in them, or any neurological symptoms promptly so that their doctor can organise appropriate imaging and specialist assessment if needed. A referral to a clinical geneticist shortly after diagnosis is strongly recommended to discuss the condition in more depth, consider rarer disorders which can be confused with NF1 and to offer assessment of other family members and discuss risks and options when planning a family. It is also very helpful for teenagers with NF1 to be referred again to genetics services just before they leave school for genetic counselling and advice. Further Information There is an informative booklet created by the Children’s Tumour Foundation called ‘Newly Diagnosed with NF1, A guide to the basics.’ This is available at www.ctf.org Educating families with NF1 about their condition and what to look out for is an invaluable step in self-advocacy.