Patient Stories – share yours with the community!

We’re currently collecting answers to questions that paint a picture of a journey with acromegaly. It’s our hope that these patient stories will help bring awareness to the struggles of this rare disease and the long road to diagnosis. The stories may also help bring patients together and provide a sense of comfort in the fact that we are not alone. Sharing these stories may also help undiagnosed patients recognize their symptoms and get diagnosed faster.

If you’d like to share your story, please email your answers to the following questions (as many or as few answers as you’d like) to acromegalyottawa@gmail.com.

We will compile your answers into a narrative and send it to you for final approval before it is posted. It is your choice to identify yourself, or tell your story anonymously.

What was the first symptom you experienced that led to your eventual diagnosis?
Were other conditions or diseases suspected before acromegaly?
How was your life affected by your symptoms pre-diagnosis?
Describe the day/moment when you finally got the acromegaly diagnosis.
What was it like immediately after diagnosis? Did you do your own research?
How did your family and friends react to your diagnosis? How did YOU react to your diagnosis?
How was/is your immediate support system? Family, friends?
How were your symptoms post diagnosis?
Describe any noteworthy or interesting interactions with doctors throughout your journey (pre and post diagnosis).
Describe the process of your surgery, before and after, your healing journey.
Describe any limitations you currently experience due to acromegaly (i.e. travel).
Describe/list any formal support networks you belong to. What value do they provide for you?
Do you still have unanswered questions about acromegaly?
What do you wish were different about the medical system? Describe any holes in the system or problems you have encountered.

 

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