November 18, 2020

I Have Connective Tissue Disorder (hCTD) Ehlers-Danlos Syndrome (EDS)

My name’s Janna and I’m the founder of the health advocacy brand, Zebra Blends. I am an ex-flight attendant, real estate agent, administration assistant, barista, and most recently, a clinical pharmacist. I am also a passionate patient health ADVOCATE and rare disease patient. 

I have the heritable Connective Tissue Disorder (hCTD) Ehlers-Danlos Syndrome (EDS). I have had this condition my entire life. Heritable means it’s in my genetic makeup. Despite this and despite having had symptoms of EDS my entire life it was not until after two extremely difficult and painful pregnancies that I pushed harder to find the root cause of my bagful of seemingly unrelated issues and symptoms. I knew they had to be connected somehow. 

After the birth of my second baby I sought out the assistance of a clinical geneticist. A doctor specialising in genetic medical conditions. This doctor made a clinical diagnosis of hypermobility type EDS in me in less than ONE hour. This seems absurd right?! After a lifetime of symptoms to know what was underpinning it all in less than one hour, was ever so validating. 

It restored confidence in me to keep pushing to see the appropriate doctors, to keep pushing to find treatment options and to seek out my ‘A team’. What is now, a team of doctors and allied health specialists who understand or are willing to learn, to be able to better treat CTD patients, like myself. 

For me daily pain, both acute and chronic is a huge part of my life. I have pain in almost every joint in my body most days. My neck is the most severely affected, in that brainstem compression from atlantoaxial instability and severe basilar invagination are causing irreversible damage to my upper spinal cord and brainstem.

My other joints are affected by instability and / or subluxation. I experience reduced mobility because of my EDS. This is something that has been extremely challenging to accept as a fairly active and fit person prior to the onset of more severe symptoms after my pregnancies. I now use mobility aids from time to time, and am also required to wear a cervical neck brace most days for a period of time.  

There is a colloquial saying in research circles of clinicians exploring and diving deeply into the realm of hCTD, it is, ‘if you can’t connect the issues, think connective tissues’. It is so aptly correct and the simplicity of it sobering. 

I believe an engaged and confident general practitioner is vital to assisting the complex patient achieve an overarching diagnosis. If a patient has more than 5 or 6 different specialists looking after them, it is always prudent to consider a missed CTD diagnosis. 

To follow my journey please jump on over to @Zebrablends on both facebook and instagram. 

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Written by: Janna Linke
My name’s Janna and I’m the founder of the health advocacy brand, Zebra Blends. I am an ex-flight attendant, real estate agent, administration assistant, barista, and most recently, a clinical pharmacist. I am also a passionate patient health ADVOCATE and rare disease patient.

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