Skip to main content
Macular Disease Foundation Australia
  • My Cart
  • Text Only
  • Listen
  • Print Page
  • Language
    • English
    • Arabic
    • Chinese
    • Greek
    • Italian
    • Portuguese
    • Spanish
    • Vietnamese
  • Search form

Check My Macula Check My Macula Join the Community Join the Community Order Free Information Order Free Information Call our helpline at 1800111709 Helpline
1800 111 709
Donate Donate
  • Home
  • Macular Disease
    • Macular Degeneration
      • About Macular Degeneration
      • Check My Macula
      • What Happens?
      • Risk Factors
      • Prevention
      • Detection
      • Diagnosis
      • Treatment
      • Charles Bonnet Syndrome
      • Cataracts and Macular Degeneration
      • Frequently Asked Questions
    • Diabetic Retinopathy
      • About Diabetic Retinopathy
      • About Diabetes
      • What Happens?
      • Risk Factors
      • Prevention
      • Detection
      • Diagnosis
      • Treatment
      • Frequently Asked Questions
    • Low Vision
      • Living with Low Vision
      • Carer and Family
      • Aids and Technology
      • Slips, Trips and Falls
      • Legal blindness
    • Other Macular Diseases
      • Best Disease
      • Macular Hole
      • Macular Pucker
      • Macular Telangiectasia
      • Myopic Macular Degeneration
      • Retinal Detachment
      • Retinitis Pigmentosa
      • Retinal Vein Occlusion
      • Stargardt Disease
      • Central Serous Chorioretinopathy (CSC)
      • Posterior Vitreous Detachment and Floaters
      • Vitreomacular Traction Syndrome
    • Visit Eye Health Professional
      • Eye Injection Costs and Rebates
    • Macular Disease
      • Anti-VEGF injections for macular disease
  • Research
    • Research Grants Program
      • Research Grants Awarded
      • Research Grant Recipients
      • Apply for the 2021 MDFA Research Grants Program
      • Research Grants Panel
    • Support Research
    • Latest Research
      • Research News
      • MDFA Research
      • Macular Diseases
      • Understanding Research
      • Social Impact
    • Research Updates
      • Annual Research Update
      • Weekly Research Updates for Professionals
    • Research studies
      • Research participants needed in the Canberra region who enjoy art and have vision loss
  • Resources
    • Order Publications and Resources
    • Find a Healthcare Provider
    • Audio and Video
      • Audio
      • Podcasts
      • Patient Voices
      • Videos
    • Macula Menus
    • Check My Macula toolkits
    • Aged care resources
  • News & Events
    • Newsletters
      • Vision Voice Newsletters
      • Subscribe to Newsletters
      • Archive
    • News
      • 2021 news
      • 2020 news
      • 2019 News
      • 2018 News
      • 2017 News
      • 2016 News
      • Archived News
    • Events & Activities
      • Community Events
      • Education Sessions
      • Events Calendar
      • Watch past webinars
    • Media Centre
      • Media Releases
  • Foundation
    • Organisation
      • History
      • Objectives
      • Guiding Principles
      • Annual Reports
      • Whistleblower Policy
      • Financial Statements
    • People
      • Patron
      • State Patrons / Representatives
      • Ambassadors
      • Foundation Board
      • Committees
      • State Chairs
      • National Research Advisor
    • Our Work
      • Awareness
      • Education
      • Support Services
      • Research
      • Representation
    • Support Us
      • Donate
      • Bequests
      • Fundraise
      • Volunteer
      • Friends of the Foundation
      • Sponsors and Supporters
      • Professional Friends
    • Contact Us
Listen
Macular Disease Foundation Australia
Check My Macula Macula Join the Community Join Us Order Free Information Free Info Donate Donate
Menu
  • My Cart
    • Language
      • English
      • Arabic
      • Chinese
      • Greek
      • Italian
      • Portuguese
      • Spanish
      • Vietnamese
    • Home
    • Macular Disease
      • Macular Degeneration
        • About Macular Degeneration
        • Check My Macula
        • What Happens?
        • Risk Factors
        • Prevention
        • Detection
        • Diagnosis
        • Treatment
        • Charles Bonnet Syndrome
        • Cataracts and Macular Degeneration
        • Frequently Asked Questions
      • Diabetic Retinopathy
        • About Diabetic Retinopathy
        • About Diabetes
        • What Happens?
        • Risk Factors
        • Prevention
        • Detection
        • Diagnosis
        • Treatment
        • Frequently Asked Questions
      • Low Vision
        • Living with Low Vision
        • Carer and Family
        • Aids and Technology
        • Slips, Trips and Falls
        • Legal blindness
      • Other Macular Diseases
        • Best Disease
        • Macular Hole
        • Macular Pucker
        • Macular Telangiectasia
        • Myopic Macular Degeneration
        • Retinal Detachment
        • Retinitis Pigmentosa
        • Retinal Vein Occlusion
        • Stargardt Disease
        • Central Serous Chorioretinopathy (CSC)
        • Posterior Vitreous Detachment and Floaters
        • Vitreomacular Traction Syndrome
      • Visit Eye Health Professional
        • Eye Injection Costs and Rebates
      • Macular Disease
        • Anti-VEGF injections for macular disease
    • Research
      • Research Grants Program
        • Research Grants Awarded
        • Research Grant Recipients
        • Apply for the 2021 MDFA Research Grants Program
        • Research Grants Panel
      • Support Research
      • Latest Research
        • Research News
        • MDFA Research
        • Macular Diseases
        • Understanding Research
        • Social Impact
      • Research Updates
        • Annual Research Update
        • Weekly Research Updates for Professionals
      • Research studies
        • Research participants needed in the Canberra region who enjoy art and have vision loss
    • Resources
      • Order Publications and Resources
      • Find a Healthcare Provider
      • Audio and Video
        • Audio
        • Podcasts
        • Patient Voices
        • Videos
      • Macula Menus
      • Check My Macula toolkits
      • Aged care resources
    • News & Events
      • Newsletters
        • Vision Voice Newsletters
        • Subscribe to Newsletters
        • Archive
      • News
        • 2021 news
        • 2020 news
        • 2019 News
        • 2018 News
        • 2017 News
        • 2016 News
        • Archived News
      • Events & Activities
        • Community Events
        • Education Sessions
        • Events Calendar
        • Watch past webinars
      • Media Centre
        • Media Releases
    • Foundation
      • Organisation
        • History
        • Objectives
        • Guiding Principles
        • Annual Reports
        • Whistleblower Policy
        • Financial Statements
      • People
        • Patron
        • State Patrons / Representatives
        • Ambassadors
        • Foundation Board
        • Committees
        • State Chairs
        • National Research Advisor
      • Our Work
        • Awareness
        • Education
        • Support Services
        • Research
        • Representation
      • Support Us
        • Donate
        • Bequests
        • Fundraise
        • Volunteer
        • Friends of the Foundation
        • Sponsors and Supporters
        • Professional Friends
      • Contact Us
  • Home
  • Foundation
  • Support Us
  • Friends of the Foundation
  • Erin Philpot
Back

Foundation

  • Organisation
    • History
    • Objectives
    • Guiding Principles
    • Whistleblower Policy
    • Annual Reports
    • Financial Statements
  • People
    • Patron
    • State Patrons / Representatives
      • Western Australian State Patron
      • Victorian State Patron
      • Tasmanian State Patron
      • South Australian Custodian of Vision
    • Ambassadors
      • Jean Kittson
      • Jan Utzon
    • Foundation Board
      • Robert Kaye
      • Associate Professor Alex Hunyor
      • Brigadier John Fenwick
      • Richard Grills
      • Lisa Lusthaus
      • Imelda Lynch
      • Neil Wykes
    • Committees
    • State Chairs
    • National Research Advisor
  • Our Work
    • Awareness
      • Macula Month
        • mEYE World Photographic Competition
          • Winners
          • Categories
          • Prizes
          • Judges
          • Sponsors and Supporters
          • Frequently Asked Questions
          • Terms and Conditions
          • 2016 mEYE World Photographic Competition
          • 2015 mEYE World Photographic Competition
          • 2014 mEYE World Photographic Competition
          • 2013 mEYE World Photographic Competition
          • 2012 mEYE World Photographic Competition
        • Meet Mac De Gen
        • Television and radio
          • 2014 Macular Degeneration Advertising Campaign
        • Keep on Driving Safely campaign
        • World Sight Day
        • Vision Van
      • Education
      • Support Services
      • Research
      • Representation
        • Submissions
          • Archived submissions
        • Reports
          • Low Vision, quality of life and independence: Aids and Technologies review (2016)
          • Economic Impact of Diabetic Macular Oedema (2015)
          • Client Services Evaluation (Annual)
          • Ripple Effect of Vision Loss (2013)
          • Global Ageing & Vision Summit (2013)
          • Angiogenesis Foundation Paper (2012)
          • Eyes on the Future (2011)
          • Archived reports
        • Campaigns
          • Federal Election 2016
          • NDIS & Aged Care Reform
          • Commonwealth Home Support
          • Archived Campaigns
            • Diabetic macular edema
            • Pin-only credit cards
            • South Australian hospital crisis
            • Sight for Seniors
    • Support Us
      • Donate
      • Bequests
        • Enquire about Leaving a Bequest
      • Fundraise
        • Larapinta Challenge 2018
        • 50 Good Reasons to support Macular Degeneration
        • Enquire About Fundraising
      • Volunteer
        • Become a volunteer
      • Friends of the Foundation
        • Val Nicholson
        • Shane Dunbar-Reid
        • Helen Siemering
        • Life in lockdown: Nancy
        • Susan Harvey
        • Mel Byrnes
        • Denis Sutton
        • Alicia Thompson
        • The earlier the better: Jessica Falon
        • Life in lockdown: Jim
        • Life in lockdown: Val
        • Through Her Eyes: A Tribute
        • Generational blindness from AMD
        • AMD: Know your family risk
        • A life changing, art changing diagnosis of AMD
        • Erin Philpot
        • Jean and Elaine Kittson
        • Nancy Little
        • Amanda Little
        • Cheryl O’Reilly
        • Anne Ness
        • Become a Friend of the Foundation
      • Sponsors and Supporters
        • Enquire About Supporting the Foundation
      • Professional Friends
        • Become a Professional Friend - Ophthalmologists
        • Become a Professional Friend - Optometrists
    • Contact Us

    Erin Philpot

    Life doesn’t stop because you have Stargardt’s

    FOF_Erin_Philpot.jpg

     
    Seventeen is an age we’re meant to look to the future with excitement and possibility. For Erin Philpot, it was the age she learned she’d face a future without sight.
     
    Erin has Stargardt’s disease, a rare genetic eye disease which generally first appears between the ages of 10 to 20. It causes the cells in the centre of the retina to die affecting the macula and central vision, leaving only peripheral vision intact. 
     
    A year 11 student at the time of her diagnosis, Erin was devastated on hearing her future described with words like; legally blind, no drivers licence, strained recognition of faces, loss of independence.
     
    The news turned Erin’s world upside down. “At first I was launched into a downwards spiral of emotion - anger, depression, anger, and then even more anger. It was a pretty horrible time. There were times when I didn’t care about anyone else but myself. I was hard on my mum – it’s awful to recall sometimes. Then one day I realised I had to find a way to live with this disease. I started to come up with coping mechanisms to help see me through.”
     
    A mark of every seventeen year olds independence is learning to drive, and for Erin it was no different. “The epitome of independence for me was to get my drivers licence. I carried on learning after the diagnoses, even though I was told my sight would deteriorate quicker than it did. Driving became my all-time favourite thing,” says Erin.
     
    “As my vision worsened after about three years, my licence was taken away from me and the downward spiral began again. It was like starting from the scratch.” 
     
    Those early years were hard for Erin, but this hasn’t stopped the now 28 year old from her living life to the full. Erin’s husband Marcus, who she married in 2014, has been an amazing support.  “The only constant for me when I was in my downward spirals was my mum and dad, and my wonderful husband.”
     
    Describing herself as hugely independent Erin said that she has never wanted people to feel sorry for her and does her best to not let Stargardt’s impact her life. 
     
    “I’ve got a great job as an Assistant Store Manager with a major retailer. Your life doesn’t stop because you have Stargardt’s, but it can be hard at times. I have issues with recognising faces in the street, that’s a massive challenge, and one of the biggest things is constantly explaining to people about the disease. I get asked at least five times a day if I need glasses and I find it’s just too longwinded to explain, so I just say ‘yes I do’.”
     
    Although Stargardt’s is a genetic condition, Erin is the first member in her family with the disease.  “Given the genetic link, my parents do feel a lot of blame. But Mum has been my rock and my saving grace. She probes specialists and is constantly on the lookout for new research. And Dad has been my logistical support, driving me back and forth to all specialist appointments. Dad just genuinely believes in me, and in everything I do and I cannot do anything wrong in his eyes.” 
     
    Surrounded by love and support from family and friends Erin had until recently preferred to avoid awkward conversations about her vision loss than trying to explain her condition and the side affect. 
     
    “There are so many people worse off than me, without the support network that I have. I hope sharing my story might be the difference one day for another young person diagnosed with Stargardt's, and although I'm most probably too far gone in deterioration for any research to directly benefit me, I do hope it will help another young person in the future.”
     
    You can help the Foundation support people like Erin by donating now.
    Share this article
    Select Your Type?
     
     
     
    • Home
    • Macular Disease
    • Research
    • Resources
    • News & Events
    • Foundation

    Contact Us

    1800 111 709
    [email protected]
    Suite 902, Level 9, 447 Kent Street, Sydney 2000

    Follow Us

    acnc_logo_reverse.png


    Helpline 1800 111 709

    Donate

    Macular Disease Foundation Australia ABN 52096255177
    • Privacy Policy
    • Site Map
    • Terms & Conditions
    • Disclaimer