Tuesday, December 22, 2009

Playing the Numbers

This is a repost from my FaceBook account.

A fellow HPTH patient recently got some of the best news in the world. In return, this patient has actually received hate mail and been de-friended because something good happened to her. People have called her undeserving. One person even went so far as to say that because she was surgically-induced, rather than idiopathic, that her success didn't count for anything.

Personally, I find such behavior reprehensible. Begrudging someone who has suffered for 14 years just because something finally went right... that is just appalling.

So, I felt the need to ramble about a few numbers. If Non-surgical were the only HPTH patients...

With surgical-onset, the odds of becoming HypoParaTHyroid are 1 in 2,500.

Without surgical onset, it is 1% of 1 in 2,500... or 1 in 250,000!!!

Just how many doctors would have any interest in something that only strikes 4 people per million?

I did that math with my kids the other day.
As of the last census, there are almost 305 million people in the US.
That means that there are a total of 122,000 patients in the US who are HPTH.
Of those, only 1,220 are NON-surgical HPTH patients.
Assuming an even split among all 50 states, that comes down to less than 25 HPTH non-surgical patients PER STATE.
Look at the size of California or Texas. Only 25 non-surgical patients in those states?
And, non-surgical has multiple classifications: idiopathic, auto-immune, and congenital. Take that less than 25 per state and split it among three separate causes. Just what kind of odds are you looking at now?

It's hard enough to find a good endocrinologist, from what I've read. If it weren't for surgical patients, we would be lucky to find a competent doctor within a 4-state radius.

Just because someone's surgeon slipped up to cause their disorder, instead of having their body turn against them and just start to shut down, does not mean they suffer less. If anything, they suffer harder. Whereas those of us (myself included) who are idiopathic are more likely to deal with a gradual decrease of parathyroid hormone, those surgically-induced patients most often have to deal with sudden loss. They go from 60 to zero overnight.

I am not attempting to belittle any person's feelings. Anyone who has suffered through a long-term illness or injury understands how sometimes it does hurt to see that someone else find an unusual success that as of yet may or may not be able to be duplicated. But to turn your back on that person, to belittle her right to receive treatment?

If I had any faith in the human race as a whole, I would be surprised by this behavior. However, working in the media, one can easily see the extreme lows and depravity to which people will stretch. Therefore, sadly, I cannot even call this behavior 'unbelievable.' It is still reprehensible, though.

Congratulations, girl. Your success restores hope in my heart that something conclusive may be found yet in my lifetime, stopping the 'fact' that this disease/condition will lead to disability. And hope is a very powerful feeling.

A footnote to this information, providing sources, correlations, and/or corrections to said information. ... because playing Devil's Advocate is a pain. All sources are medically and governmentally accepted as reliable sources.

Source: CMJ.org
An epidemiologic survey conducted in Japan showed the prevalence rate of hypoparathyroidism and pseudohypoparathyroidism as (5.5–8.8)/million and (2.6–4.2)/million, respectively.

The incidences of idiopathic hypoparathyroidism and pseudohypoparathyroidism (PHP) have not been determined in the United States. Rates following surgical procedures such as thyroidectomy vary depending on the extent of the surgery and experience of the surgeon.

Source: WrongDiagnosis.com
Hypoparathyroidism is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that Hypoparathyroidism, or a subtype of Hypoparathyroidism, affects less than 200,000 people in the US population.

Taking the above information into account and using the maximum number for the US as stated by the ORD and NIH, the following notations can be taken into account:

The odds of becoming HPTH are a possible maximum prevalence rate of 1 in 1,525.
NON-surgical onset occurs in only 1% of HPTH cases ... or 1 in 152,500. (source: Parathyroid.com
Deficient Parathyroid Hormone Secretion. * * * This type of hypoparathyroidism is the easiest to understand, and it accounts for more than 99% of ALL patients with too little parathyroid hormone. ... The reason that there is too little parathyroid tissues is because all of the parathyroid glands were (unintentionally!) removed at the time of surgery. ... Deficient PTH secretion without a defined cause (e.g. surgical injury) is termed Idiopathic hypoparathyroidism. This disease is rare and can be congenital or acquired later in life. This is a very rare form of a very rare disease!!

Non-surgical HPTH only strikes a maximum possible 6 people per million?

As of the last census, there are just over 304 million people in the US. (source: the US Census Bureau)
based on the above mentioned statistical maximum of 200,000 patients in the US who are HPTH.
Of those, only 2,000 are NON-surgical HPTH patients.
Assuming an even split among all 50 states, that comes down to less than 40 HPTH non-surgical patients PER STATE.
While this number is higher, this is shown to be the maximum according to the 'powers that be'. Only 40 non-surgical patients per state.

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