Number Crunching Neuropathy

While you're raising a glass to Christmas, or wishing it were over, or not even celebrating it, like a great deal of the world's population, spare a moment to consider the figures in today's post.
Mark Twain wrote "There are three kinds of lies: lies, damned lies, and statistics" and while the sceptical mind will always look at this statement approvingly, sometimes we just have to face facts, look at undisputed figures and use them. In this case, you can't help but wonder why neuropathy still remains such a vague and 'hidden' disease. Certainly, if you look at the list of diseases at the end and the attention they get compared to the size of population, it confirms that neuropathy is still very much a poor relation, in the nerve disease family, at least as far as the US is concerned. With very few exceptions, there is no current proof that the rest of the world has a more enlightened view, although it has to be said that the discovery of new and effective treatments for all, would certainly raise the profile!
The list comes courtesy of Leslie MacGregor Levine, V.M.D., Ph.D. and stems originally from a Neuropathy Association presentation during their 2010 Conference.

Highlights of Neuropathy Summit Meeting
December 3-5, 2010
Leslie MacGregor Levine, V.M.D., Ph.D.

Neuropathy Association President Tina Tockarshewsky‘s Presentation

1. The Neuropathy Association: Has 50,000 members, with 135 support groups nationwide
Mission is awareness, education, support, advocacy and research on NP

2. Statistics on Neuropathy
20 million Americans have NP, and 8% of the world’s population has NP
This includes 15-20% of cancer patients, and 10-14% of people over the age of 40
A leading cause of disability due to pain, gait instability, falling and foot ulcers.
$3.5 billion in health care costs.
Most common type is small fiber loss
NP is the most common and costly complication of diabetes.
The numbers of people with NP are increasing as the population ages, diabetes incidence increases, the lifespan becomes longer of HIV+ patients, and increased diagnosis with increased professional awareness

3. Among NP patients, age of onset is
0-20’s – 3%
30’s-40’s - 27%
50’s-60’s - 55%
70’s-80’s - 15%

4. Causes of NP
30-35% Idiopathic – some with undiagnosed pre-diabetes
14-33% Diabetic, most common type II
12-20% Autoimmune, inflammatory and infectious – Guillian-Barre, Sjogren’s, lupus, rheumatoid arthritis; Inflammatory includes chronic inflammatory demyelinating polyneuropathy (CIDP) and multifocal motor NP (MMN);
5% Infectious - leading cause in world is leprosy. Other infectious causes are shingles, hepatitis, HIV and Lyme disease
6-27% Hereditary, such as familial amyloidosis, Charcot-Marie-Tooth disease
4% Chemotherapy-induced
4% Trauma-induced
6% Other, including toxin-induced such as heavy metals, Agent Orange, alcohol, excess B6; paraneoplastic; drug-induced; metabolic like renal and liver disease; nutritional deficiencies (B12 most common)

5. Time between onset of symptoms and diagnosis:
28% less than 1 year
55% 1-5 years
15% 5-15 years

6. 67% get diagnosed by a neurologist, 15% by a primary care physician

7. Many feel that although their family and friends know about their NP, they do not fully understand its impact on their lives

8. There is a huge discrepancy between the numbers of people with NP and the amount of research funding NP gets relative to other diseases, including those affecting far fewer people. People are not very aware of NP, and think it is “not that bad”


Multiple Sclerosis
% of US population 0.9%
# NIH grants 872
# grants for each 1% of population with this disease 969

% of US population 1.0%
# NIH grants 2055
# grants for each 1% of population with this disease 2055

% of US population 2.6%
# NIH grants 3689
# grants for each 1% of population with this disease 1496

% of US population 13%
# NIH grants 3309
# grants for each 1% of population with this disease 255

% of US population 14%
# NIH grants 141
# grants for each 1% of population with this disease 10

Much more research is needed

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