At this point a lot of people may not understand where all of this came from. The sudden test results and family history seemed to sprout out of a garden that never seemed to hang out in my backyard. There was a reason for that.
I only told those closest to me that needed to know. Whether there was an appointment I had to go to instead of an event etc. Even then I hesitated. This disorder is so severe sounding, because it is. The difference between my perspective and others is that I was quite nonplussed about it. I grew up with the possibility. Facts are facts, my Dad is quite alive despite the mountain of medication and frequent surgeries. Comparatively, my situation really isn’t that bad. That is, until I learned I had the gene. Perspective changed pretty quick after that. It was easier to mention when I had the surety of clean clinical test results behind me.
I am only going to show my family history using percentages for confidentiality reasons, but it’s enough to get the point. These calculations are based as far back as 2 familial generations before me only with members that are connected genetically to acquire the gene.
Percent of TMEM43 positive family members
Percent of Members with the Gene based on Gender
Percent of Members Implanted with an ICD
Percent of Members who Died directly from the disorder, (this however happened before the ICD was invented. We have had no deaths in our family from this disorder since because of the implantable defibrillators)
Percentage of Members Diagnosed and symptomatic based on age (those who died of it are included and considered as a stat at age of death)
Age 10-20: 14%
Age 20-24: 0%
Age 25-30: 42%
Age 30-34: 14%
Age 35-40: 28%
That’s all for now. The numbers speak for themselves but there is hope! My Mothers genetic contribution could very well dim the effects of TMEM43. I’ve been reassured many times I could live to be 90 and never have a single arrhythmia. I am an individual and that counts! I just have to be prepared for anything and live life as I would before. So long as I don’t plan on running any marathons….
May Your Adventures Be Wild and Your Heart Be Strong,
~ Chelsea Alice ~