What if I told you that you know someone with Carney Complex?

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