ausEE Inc.

a charity dedicated to improving lives affected by an eosinophilic disease

Just Diagnosed?

What to do next...

Getting diagnosed with an EGID can be overwhelming. But like many others, you most likely had a long path to get a diagnosis and can be somewhat relieved to be able to move forward.

To help you with the news:

  1. Be honest with your doctor. If you find the news overwhelming, then say so. If you feel panicked, shocked, stressed, anxious or confused, you may not be able to process the important information your doctor is giving you. If you're not ready to fully comprehend your diagnosis, take some time to deal with the emotions that may be getting in the way of understanding. This could mean asking your doctor for another appointment or a follow up phone call in a day or two to get the facts.
  2. Learn about your condition. This website is filled with information to help you along your journey. Check out our What is EGID? page and view our online Eosinophilic Disorders Explained brochure. There is an excellent video explaining EoE on the CartoonGI website here
  3. Know that you are not alone. ausEE offers a dedicated Facebook group for families caring for a child with an EGID and an additional Facebook group for adults living with an EGID. For children we have published three children’s books 'Meet Arabella', 'Being Henry' and 'Olivia and Kate' to help explain the journey. You can purchase them for just $8 each including postage from our online gift shop.
  4. Plan to make lifestyle changes. Once you know the facts and are ready to decide about treatment, think about how your life may change. Will your diet change? Will you need to be on medicine? Visit our Living with EGID page for some handy information. If you will be trialing an elimination diet or are living with other food allergies you may find our Australian Allergy Friendly Finds Facebook page helpful.
  5. Together we are making a difference. We invite you to follow us on our public Facebook page and subscribe to our free monthly eNewsletters where we share relevant information for people with eosinophilic disorders and their caregivers, as well as outline the work that we are doing in helping, supporting and educating people with EGID.

Questions to ask your doctor

Take this list of questions with you to your next doctor's appointment and any others you may have. 

Knowledge is empowerment.

  1. What is the medical name for my condition? This is very important if you plan on researching your condition.
  2. If known, what is the cause of my condition?
  3. Do you recommend that I get a second opinion from another specialist?
  4. What is the treatment for my condition? Do I have a choice of treatments? If so, what are they?
  5. How long does the treatment last?
  6. Is this condition treatable with medication?
  7. What medication will I need?
  8. How long will I need to take it?
  9. What dietary changes will I need if any?
  10. Should I be seeing any other additional medical professionals eg. allergist and dietitian?
  11. Can you recommend any other resources so that I can better understand my condition?
  12. Other questions I want to ask...

 

Source: adapted from: https://www.morethanmedication.ca/ 

 

Page last modified: 27 April, 2019

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