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My Journey with Bronchiectasis as a: Young Maori Child and now as a Maori Woman with a disability.

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Presentation on theme: "My Journey with Bronchiectasis as a: Young Maori Child and now as a Maori Woman with a disability."— Presentation transcript:

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2 My Journey with Bronchiectasis as a: Young Maori Child and now as a Maori Woman with a disability

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

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

5 1 Whooping Cough 2 Chest Infections 3 Tests WHOOPING COUGH:

6 Parental Concern HospitalTests Sputum, X-Ray, Hearing Tests, CT Scan, Sweat Test, Cilia Diagnosis Bronchiectasis Primary Ciliary Dyskinesia Irreparable damage to the lungs Treatment Plan PreventionPhysiotherapy Oral/I.V Antibiotics

7  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

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

9 Exhausted and Stressed Parents and child with a disability Child goes on respite care with a family member or other person Parents and child will have a much needed break Gives parents much needed time for their other children Parents can re-energize for the next round!

10 IMPLEMENTATION SELF-MANAGEMENTSELF-CARE PARTNERSHIP PATIENT NEEDSPATIENT RESPONSIBILITY TRUST RESPECTUNDERSTANDING

11 NGA HIRA E WHA TINANAWAIRUAWHANAUHINENGARO

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16 Fri 1 Feb ‘13

17 2012 JULY FACEBOOK GROUP PAGE JULY - FACEBOOK GROUP PAGE DEC DRAFT CONSTITUTION DEC - DRAFT CONSTITUTION2013 JAN MEETING WITH DR LANCE O’SULLIVAN JAN - MEETING WITH DR LANCE O’SULLIVAN JAN TE KARERE INTERVIEW JAN - TE KARERE INTERVIEW FEB OUR 1 st NORTHLAND BRONCHIECTASIS SUPPORT GROUP MEETING FEB - OUR 1 st NORTHLAND BRONCHIECTASIS SUPPORT GROUP MEETING MARCH CHARITY FUNDRAISING EVENT MARCH - CHARITY FUNDRAISING EVENT APRIL MEDICAL DIRECTOR & DIETICIAN ON BOARD APRIL - MEDICAL DIRECTOR & DIETICIAN ON BOARD JULY A WEBSITE JULY - A WEBSITE AUGUST NATIVE AFFAIRS INTERVIEW AUGUST - NATIVE AFFAIRS INTERVIEW

18 DIETICIAN: Eruera Maxted Northland District Health Board Whangarei MEDICAL DIRECTOR: Dr Lance O’Sullivan Te Kohanga Whakaora Clinic Kaitaia FOUNDER & COORDINATOR Esther-Jordan Muriwai https://www.facebook.com/BeronchiectasisSupportGroupNZWEBSITE:

19  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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