You‘d probably look at the numbers for Carney Complex and say: That‘s impossible. Too rare!
What if I told you you are wrong?
You‘d more than likely shake your head in disbelief. Asking yourself hadn‘t we just done the math? No chance!
How could I even believe this?
Let me change your perspective with
Stanley Milgram‘s small-world theory, also often associated with the phrase six degrees of separation.
Small-World Theory
Stanley Milgram, together with other researchers, conducted several experiments examining the average path length for social networks of people in the United States. The results were groundbreaking because it suggested that human society is a small-world-type network characterized by short path-lengths.
Six Degrees of Separation
Six degrees of separation is the idea that all living things and everything else in the world are six or fewer steps away from each other. Leading to a chain of ‘a friend of a friend’ statements. This in turn connects any two people in a maximum of six steps. Frigyes Karinthy in 1929 was the one to make this observation.
Current Numbers for Carney Complex
There are 750 of 7.9 billion documented cases of people worldwide with a diagnosis of Carney Complex (CNC). That makes 1 in every 10 million. What people don‘t understand when it comes to CNC is that it‘s an umbrella term for a number of conditions, that could just as well stand on their own. The name itself says it all, it’s ‘complex’, it’s made up of an intertwining group of medical conditions that are different for every single patient. Everyone’s experience of CNC is so different, even in families that share the same pathogenic mutations.
For example
I look at CNC as my primary condition. CNC causes tumors and cancerous growths in different areas of my body. This is why I have also been diagnosed with Hepatocellular Adenoma, Fibrolamellar Hepatocellular Carcinoma, cardiac myxomas, papillary cancer of the Thyroid, Acromegaly and PPNAD Cushing’s Syndrome. While Cushing’s was “cured” it resulted in me having a form of Addison’s disease. These are what I call my secondary conditions. I‘ve learned through reading and the interaction with others that my secondary conditons (Cushings, Acromegaly, Hepatocellular Adenoma, Fibrolamellar Hepatocellular Carinoma and papillary cancer of the Thyroid) can occur alone. Meaning there does not need to be a connection to CNC, but there could be – like in my case.
Does this mean I have Carney Complex?
No. This doesn‘t mean that someone who has Cushings Syndrome also has CNC. However if theirs is caused by PPNAD and they have a history of other tumors in or on their body it might be worth their medical team considering Carney Complex. You have to meet other criteria too which you can check out here.
How you can help!
Because of the ‘small-world theory’ and the ‘six degrees of separation’ you might know someone who knows someone (x6), that has Cushing‘s disease (caused by PPNAD or a pituitary tumour). And even if you don‘t, sharing with the people around you about Carney Complex, those people then might know someone, who knows someone (x6). Quintessentially leading to you knowing someone who could have CNC, because you’ve unconsiously become part of the (small-world) CNC network.
If I’ve changed your perspective please feel free to comment and share my blog post on social media.
The sound of one voice only carries a certain distance, many voices can carry way further.
Help me break the isolation and reach those that need to know that they aren’t alone!
Join my voice and let’s make some noise!
(Click here to get to fb and share from there)
Much love
Jennifer