Why We Post Patient Stories: And Why the World Needs to Hear Yours


Every day on this blog, we post patient stories. That’s one of the amazing things about working here at Global Genes. We hear from patients from literally–all over the world. Africa, Europe, North America, South America, China! Patients come out of the wood work to send us their histories, tell us about their diagnostic journeys and give hope to the soon-to-be or newly diagnosed.

We know that rare disease medical journeys can be intimidating, shocking, and very difficult to relive. We understand that sitting down to write your story may feel overwhelming–so much has happened, how could you possibly fit it all into one article? The blank page in front of you can discourage you from writing that first word–so why do so many power through their writer’s block?

Think back to the first time you realized you or your child had abnormal symptoms. Think back to the first blood test or x-ray. Do you remember how it felt to wait those few days for the results–usually only to find out that you would need to see yet another physician for yet another test? It’s so easy to fall into the pit of hopelessness that comes with unraveling a rare disease. Sometimes you wished there had been someone there to tell you what the road ahead would look like. Maybe give you a clue about what doctor to see or what test was most important. What if your child was just diagnosed and you were able to hear from a patient with that same disease who was living–functioning at 35 years old?

It’s these connections that generate hope in our small, but global community.

So please, if you haven’t yet told your story to the world--start now. Someone out there is waiting to hear your voice.

Tips for Submitting Your Story:

  • We love to hear your story in full.
  • When did your symptoms first begin? At birth? Later on in life?
  • How did your symptoms affect your every-day life?
  • What sort of doctors did you see?
  • What sort of exams did you have?
  • How and when were you diagnosed—and with what?
  • Is there a treatment or cure for your condition?
  • Have you gone through any therapies or clinical trials?
  • What is the outlook for the future?
  • And lastly—what sort of advice do you have for other patients who may be going through a similar diagnostic journey?

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Filed Under: Insights, Patient Stories

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