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NORTHLAND

My Journey with Bronchiectasis as a:. Young Maori Child and now as a Maori Woman with a disability. NORTHLAND. BRONCHIECTASIS. SUPPORT GROUP. WHANAU:. From back: Dad, Reginald, Te wairua, Mum, Camron, Aura & Esther. Te wairua and I. Te wairua and Reginald. RAUMANGA TE KOHANGA REO:

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NORTHLAND

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  1. My Journey with Bronchiectasis as a: Young Maori Child and now as a Maori Woman with a disability NORTHLAND BRONCHIECTASIS SUPPORT GROUP

  2. WHANAU: From back: Dad, Reginald, Te wairua, Mum, Camron, Aura & Esther Te wairua and I Te wairua and Reginald

  3. RAUMANGA TE KOHANGA REO: (4 years of age)

  4. WHOOPING COUGH:

  5. MY DIAGNOSIS: BRONCHIECTASIS PRIMARY CILIARY DYSKINESIA

  6. TREATMENT PLANS • PHYSIOTHERAPHY • Wedge • ACBT (Active Cycle Breathing Technique) • PEP (Positive Expiratory Pressure) • New Methods for Chest Clearance: • Long distance Walking • Any form of physical Activity that involves increased breathing is good • Clearance Vest

  7. CONTINUED • SURGERIES • I.V’s • Picc Lines • Blood Transfusion • Bronchoscopy • Drain Insertion • Porta-cath insertion • GASTROSTOMY TUBE • Bolus Feedings • Overnight Feedings • ORAL ANTIBIOTICS • I.V ANTIBIOTICS • NEBULISED ANTIBIOTICS • ORAL SUPPLEMENT DRINKS • Ensure Plus • Scandishake • Multidextrin • Fortisip

  8. RESPITE CARE:

  9. MANAGING ONE’S HEALTH :

  10. CHILD HEALTH: MANAGEMENT

  11. 22 FEBRUARY 2012

  12. 30 APRIL 2012 7 APRIL 2012 MY 21ST BIRTHDAY

  13. MY BUCKET LIST:

  14. 2012 - 2013

  15. MY PURPOSE: 2001 2013 2013 Fri 1 Feb ‘13

  16. NORTHLAND BRONCHIECTASIS 2012 • JULY - FACEBOOK GROUP PAGE • DEC - DRAFT CONSTITUTION 2013 • JAN - MEETING WITH DR LANCE O’SULLIVAN • JAN - TE KARERE INTERVIEW • FEB - OUR 1st NORTHLAND BRONCHIECTASIS SUPPORT GROUP MEETING • MARCH - CHARITY FUNDRAISING EVENT • APRIL - MEDICAL DIRECTOR & DIETICIAN ON BOARD • JULY - A WEBSITE • AUGUST - NATIVE AFFAIRS INTERVIEW

  17. CONTACT: • FACEBOOK: https://www.facebook.com/BeronchiectasisSupportGroupNZ • WEBSITE: http://ejm-te-ahumai-wawata.wix.com/bronchiectasisnz DIETICIAN: Eruera Maxted Northland District Health Board Whangarei E-mail: eruera.maxted@northlanddhb.org.nz MEDICAL DIRECTOR: Dr Lance O’Sullivan Te Kohanga Whakaora Clinic Kaitaia E-mail: lanceo@navilluso.co.nz FOUNDER & COORDINATOR Esther-Jordan Muriwai E-mail: e-j.m_te_ahumai_wawata@hotmail.com

  18. MY VISION: • To create a place for families, siblings, parents, children and individuals affected by this condition “Bronchiectasis” not limiting to “PCD” to seek guidance, resources and initiative to manage their health in the best possible way for “them”. • A place to feel unique and exceptional despite their limitations. We have the Bronx and we are okay with that. • The formation of ‘The Bronchiectasis Foundation of New Zealand’

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