Tales from people living with rare and often invisible, rare or chronic illness, disease or syndrome.
A new tale to be showcased, as told by a member of our community each Tuesday - across all Zebra Blends platforms.
Location: Melbourne, Australia
Time to diagnosis: I was initially diagnosed with Myalgic Encephalomyelitis (ME) by a really switched on GP 6 months after becoming ill. A formal diagnosis was not received until 4 years into my health journey, at this time Postural Orthostatic Tachycardia Syndrome or POTs was also diagnosed. It was not until 7 years after becoming ill that I received the structural diagnoses of Craniocervical and Atlantoaxial Instability (CCI/AAI).
Ultimate diagnoses made by: Neurosurgeon and ME/CFS specialist/s
Any mis-diagnoses along the way: Pertussis (whopping cough), Post Viral Fatigue Syndrome and Chronic Recurrent Bronchitis.
Your hope for future generations of people experiencing CTD, rare disease or other chronic illness: Without hesitation, that all patients are listened to, believed, treated with respect and given every guidance and assistance to investigate their health problems, in partnership with their healthcare team.
Location: Merrigum, Victoria Australia
Time to diagnosis: 6 months
Primary diagnoses: Vascular Ehlers-Danlos Syndrome (vEDS)
Ultimate diagnoses made by: Hospital genetics department. I had genetic testing due to having multiple spontaneous aortic and arterial dissections and also because of my family having a history of sudden deaths at early ages.
Any mis-diagnoses along the way: No
Your hope for future generations of people experiencing CTD, rare disease or other chronic illness:
That they can discover treatments and ultimately a cure.
Tale # 1: