Rarity is interesting. It is unsparing and unprecedented. If something is rare, then the patterns of logical reasoning we do in our brains to predict future outcomes are not comforting. We can't trust them. So then, if someone begins to present with uncommon circumstances multiple times to the point where it becomes statistically rare, how can they predict their own future at all? And if it's related to their mortality, how can they put themselves to sleep at night...
In the US its estimated that 907,000 people have Ulcerative Colitis. Of patients that are diagnosed with UC, around 4% present symptoms before age 5. That's 36,280 people. Typically, 25-40% of patients with UC end up needing to have their large intestine removed. If you take an average of 32.5% of patients and apply it to the 36,280 that we got earlier, you get 11,791 people in the US that will be diagnosed around 5 years old and then subsequently have the surgery. In what we could refer to as very uncommon, severe conditions. Now, on average, less than 5% of patients who get the surgery, will be diagnosed with Crohns, inside their J pouch. If we take 5% of the subset we've been developing for the sake of this analysis, we get 590 people with these circumstances in the US.
That's .00018% of the US population and .065% of UC patients. Rare.
In the Rare Disease Act of 2002, "Rarity" was defined as less than 200,000 people in the US. The European Commission on Public Health defines "low prevalence" as .05%. So, statistically speaking, the subset that we've defined would be considered very rare indeed.
As of my 24th birthday, this year, 2019, I have entered this subset. And as of my 24th birthday, this year, having my brain allow me to comfortably rest my head on a pillow and drift off into deep sleep, has become an almost impossible task. I'm confronted daily by a haze so dense with uncertainty that I cannot see 1 day in front of me. I do not know what the future holds for me. But I try to console myself with another set of "likelihoods", that get me through 24 hours.
It is likely that if I'd been born 60 years earlier than when I was born (1945) before the introduction of the ileal pouch-anal anastomosis (IPAA) surgery in 1976 and the before the introduction of Prednisone in 1955, that I'd be dead. There's a good chance I would not have made it to age 10 to receive my first dose of prednisone and to age 31 when I could get my colon removed.
I'm lucky to have been born in 1995, with the introduction of Remmicade in 1998, and Humira a few years later, and then a whole slew of drugs in the last 15 years that allowed me to make it to age 23 before having an IPAA surgery using robotic laparoscopy, followed by a subsequent restorative proctocolectomy from one of the best surgeons of this specialization in the world, who's authored much of the existing literature on the use of robotics in that surgery. And, who happened to practice 30 minutes from where I grew up.
The future holds some frightening possibilities. My situation is highly rare. But in 3 months it will January 1st, 2020. My 20th year battling, and another year of medical breakthroughs, new drugs, and new hope. As David Goggins always says, "I want to be Uncommon among Uncommon men."
In the US its estimated that 907,000 people have Ulcerative Colitis. Of patients that are diagnosed with UC, around 4% present symptoms before age 5. That's 36,280 people. Typically, 25-40% of patients with UC end up needing to have their large intestine removed. If you take an average of 32.5% of patients and apply it to the 36,280 that we got earlier, you get 11,791 people in the US that will be diagnosed around 5 years old and then subsequently have the surgery. In what we could refer to as very uncommon, severe conditions. Now, on average, less than 5% of patients who get the surgery, will be diagnosed with Crohns, inside their J pouch. If we take 5% of the subset we've been developing for the sake of this analysis, we get 590 people with these circumstances in the US.
That's .00018% of the US population and .065% of UC patients. Rare.
In the Rare Disease Act of 2002, "Rarity" was defined as less than 200,000 people in the US. The European Commission on Public Health defines "low prevalence" as .05%. So, statistically speaking, the subset that we've defined would be considered very rare indeed.
As of my 24th birthday, this year, 2019, I have entered this subset. And as of my 24th birthday, this year, having my brain allow me to comfortably rest my head on a pillow and drift off into deep sleep, has become an almost impossible task. I'm confronted daily by a haze so dense with uncertainty that I cannot see 1 day in front of me. I do not know what the future holds for me. But I try to console myself with another set of "likelihoods", that get me through 24 hours.
It is likely that if I'd been born 60 years earlier than when I was born (1945) before the introduction of the ileal pouch-anal anastomosis (IPAA) surgery in 1976 and the before the introduction of Prednisone in 1955, that I'd be dead. There's a good chance I would not have made it to age 10 to receive my first dose of prednisone and to age 31 when I could get my colon removed.
I'm lucky to have been born in 1995, with the introduction of Remmicade in 1998, and Humira a few years later, and then a whole slew of drugs in the last 15 years that allowed me to make it to age 23 before having an IPAA surgery using robotic laparoscopy, followed by a subsequent restorative proctocolectomy from one of the best surgeons of this specialization in the world, who's authored much of the existing literature on the use of robotics in that surgery. And, who happened to practice 30 minutes from where I grew up.
The future holds some frightening possibilities. My situation is highly rare. But in 3 months it will January 1st, 2020. My 20th year battling, and another year of medical breakthroughs, new drugs, and new hope. As David Goggins always says, "I want to be Uncommon among Uncommon men."
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