Transparent Tales

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. 

Tale #3:

Name: Krista

Age: 40

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).

Primary diagnoses:

ME

POTs

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.

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Tale #2:

 

Name: Bradley

Age: 28

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:

Name: Janna
Age: 35 years
Location: Sydney, Australia
Time to diagnosis: ~ 31 years. First symptoms experienced about 4 years of age.
Diagnoses:
- Hypermobile Ehlers-Danlos Syndrome (hEDS)
- Craniocervical instability, atlantoaxial instability, with brain-stem compression
- Mast Cell Activation Syndrome
Ultimate diagnosis made by: Clinical Geneticist
Mis-diagnoses along the way: Fibromyalgia, One Doctor told me, I just had 'an achy body type', Benign Hypermobility Syndrome or Hypermobility spectrum disorder (HSD).
Your hope for future generations of people experiencing CTD, rare disease or other chronic illness:
That diagnosis is timely and not delayed due to medical bias of any type. Gender, race and / or socioeconomic factors should never influence a medical practitioners treatment of a patient. And that all medical practitioners are taught the catchy phrase, “If you can’t connect the issues, think connective tissues”.
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If you would like to feature in the weekly post, “Transparent Tuesday Tales” please hello@zebrablends.com.au for more details on how to share your story of living with chronic, rare or invisible, illness, disease or syndrome.
#transparenttuesdaytales
Janna ZBs x