Amyotrophic lateral sclerosis ("ALS" also known as Lou Gehrig's Disease) is a devastating, debilitating, painful, and eventually deadly disease (ALS Symptoms). The muscles of patients with ALS atrophy while their mind remain completely intact. People diagnosed with ALS typically live for about 2-5 years.
Recently in fund raising circles the ALS Ice Bucket Challenge has taken the country by storm. This fund raising activity has raised more than $20 Million for ALS research and support of families dealing with ALS. The money generated by the ALS Ice Bucket Challenge does, in part, go to help defray the costs of caring for people suffering from ALS.
Since patients with ALS eventually lose control of all muscles (including involuntary ones involved in breathing, digestion, and heart beat), the cost of care for ALS patients becomes exorbitant.
ENVY
I tell you all of this because lately I've noticed a backlash by some people against the popularity of this fund raiser. Mostly the backlash comes from people with loved ones suffering from other potentially fatal diseases (including addiction, mental disorders, and other conditions). Their thinking is that this attention and funding is disproportionate to the number of people affected by ALS.
The comments and blog entries I've seen on this are extremely negative of ALS and the Ice Bucket challenge, the people making the entries are infuriated that so much attention has been paid to this (seemingly unworthy) cause.
INSPIRATION
I find this envy to be a terrible, negative, and destructive emotion. Rather than allowing your rage at the "unfairness" of one rare disease receiving attention disproportionate to its affect on the population, use these wonderful results as an inspiration for what could be done for other rare diseases.
Do not look at the popularity of this fund raiser as a reason to hate & envy, use it as inspiration. Through your energies in trying to replicate the success of this drive for your own favorite cause / charity. There's no reason there cannot be another wildly successful fund raiser next year to raise awareness of (for example) substance abuse.
On a side note:
There have always been celebrity diseases (AIDS receives disproportionately large federal funding) that receive funding way out of proportion to how the disease affects people's lives. Similarly there have always been orphan diseases that do not receive funding anywhere close to being representative of the disease's impact on the population (Disproportionate funding levels hampers Alzheimer's disease research). The lack of attention paid to an orphaned disease should never be used to detract from the attention and funding paid to these other conditions. Although I personally think an objective measure should be created and used to allocate public funds towards researching these diseases.
To allocation public funds, an objective measure should be used for allocating funding, something like Disability Adjusted Life Years (DALYs). It is a measure of overall Disease Burden, expressed as the number of years lost due to ill-health, disability or early death.
Additionally, for private funding of diseases I think no one should be criticized for donating to any cause. Charitable donations to worthy causes should be celebrated. I recommend verifying that charitable organizations spend your donations wisely. You can use web sites like Charity Navigator to evaluate the quality of charitable organization. It provides a graphic showing how your charity rates (chart shown for the National Organization for Rare Diseases):
Inflammatory Bowel Disease (IBD which consists of Crohn's Disease, Colitis, and a couple of much rarer rare diseases) is considered a "rare" disease (and both are listed in the National Organization of Rare Diseases: NORD: Crohn's Disease). Although CD rarely kills its sufferers directly, I have now twice come very close to death due to side-effects and complications caused by this disease. Despite modern and more effect treatments, it is likely that CD (and its complication) will shorten my life and will certainly degrade my quality of life substantially.
*I* do not begrudge the attention and funds flowing into ALS from this Ice Bucket Challenge and have cheered wildly as my children have been challenged and answered the challenge in support of this cause and I have matched my kid's contributions to this cause. I do not envy the attention, I do not secretly seethe at the "unfairness" of attention - instead, I wonder how I might increase awareness of my particular issue (Crohn's Disease) or even nearer and dearer to my heart the condition of my 19 year-old daughter, Trigeminal Schwannoma. This condition will require her to undergo brain surgery in the next couple of years. The surgery has a substantial risk of causing permanent facial paralysis and this possibility scares me more than any possible complication or side-effect of my own condition.
Just because you are unaware of other people's health conditions, does not mean they do not also suffer from varying degrees of medical issues. For instance, many members of my family have issues you would never have known and most likely we would never have told you about:
I suffer from:
Crohn's Disease (and related issues & conditions like kidney stones, fistulas, eye issues, etc.)
My daughter suffers from:
Trigeminal Schwannoma
My wife suffers from:
Endometriosis
Fibromyalgia
My brother suffers from:
Diverticulitis
My father suffers from:
Degenerative disk disease
My mother suffers from:
Sarcoidosis
My maternal grandmother suffers from:
Dementia/Alzheimer's
My paternal grandmother died from:
Cancer
My maternal grandfather died from:
Cancer
My paternal grandfather died from:
Aneurism
My sister suffers from:
Lichen Sclerosis
Recently in fund raising circles the ALS Ice Bucket Challenge has taken the country by storm. This fund raising activity has raised more than $20 Million for ALS research and support of families dealing with ALS. The money generated by the ALS Ice Bucket Challenge does, in part, go to help defray the costs of caring for people suffering from ALS.
Since patients with ALS eventually lose control of all muscles (including involuntary ones involved in breathing, digestion, and heart beat), the cost of care for ALS patients becomes exorbitant.
ENVY
I tell you all of this because lately I've noticed a backlash by some people against the popularity of this fund raiser. Mostly the backlash comes from people with loved ones suffering from other potentially fatal diseases (including addiction, mental disorders, and other conditions). Their thinking is that this attention and funding is disproportionate to the number of people affected by ALS.
The comments and blog entries I've seen on this are extremely negative of ALS and the Ice Bucket challenge, the people making the entries are infuriated that so much attention has been paid to this (seemingly unworthy) cause.
INSPIRATION
I find this envy to be a terrible, negative, and destructive emotion. Rather than allowing your rage at the "unfairness" of one rare disease receiving attention disproportionate to its affect on the population, use these wonderful results as an inspiration for what could be done for other rare diseases.
Do not look at the popularity of this fund raiser as a reason to hate & envy, use it as inspiration. Through your energies in trying to replicate the success of this drive for your own favorite cause / charity. There's no reason there cannot be another wildly successful fund raiser next year to raise awareness of (for example) substance abuse.
On a side note:
To allocation public funds, an objective measure should be used for allocating funding, something like Disability Adjusted Life Years (DALYs). It is a measure of overall Disease Burden, expressed as the number of years lost due to ill-health, disability or early death.
Additionally, for private funding of diseases I think no one should be criticized for donating to any cause. Charitable donations to worthy causes should be celebrated. I recommend verifying that charitable organizations spend your donations wisely. You can use web sites like Charity Navigator to evaluate the quality of charitable organization. It provides a graphic showing how your charity rates (chart shown for the National Organization for Rare Diseases):
Inflammatory Bowel Disease (IBD which consists of Crohn's Disease, Colitis, and a couple of much rarer rare diseases) is considered a "rare" disease (and both are listed in the National Organization of Rare Diseases: NORD: Crohn's Disease). Although CD rarely kills its sufferers directly, I have now twice come very close to death due to side-effects and complications caused by this disease. Despite modern and more effect treatments, it is likely that CD (and its complication) will shorten my life and will certainly degrade my quality of life substantially.
*I* do not begrudge the attention and funds flowing into ALS from this Ice Bucket Challenge and have cheered wildly as my children have been challenged and answered the challenge in support of this cause and I have matched my kid's contributions to this cause. I do not envy the attention, I do not secretly seethe at the "unfairness" of attention - instead, I wonder how I might increase awareness of my particular issue (Crohn's Disease) or even nearer and dearer to my heart the condition of my 19 year-old daughter, Trigeminal Schwannoma. This condition will require her to undergo brain surgery in the next couple of years. The surgery has a substantial risk of causing permanent facial paralysis and this possibility scares me more than any possible complication or side-effect of my own condition.
Just because you are unaware of other people's health conditions, does not mean they do not also suffer from varying degrees of medical issues. For instance, many members of my family have issues you would never have known and most likely we would never have told you about:
I suffer from:
Crohn's Disease (and related issues & conditions like kidney stones, fistulas, eye issues, etc.)
My daughter suffers from:
Trigeminal Schwannoma
My wife suffers from:
Endometriosis
Fibromyalgia
My brother suffers from:
Diverticulitis
My father suffers from:
Degenerative disk disease
My mother suffers from:
Sarcoidosis
My maternal grandmother suffers from:
Dementia/Alzheimer's
My paternal grandmother died from:
Cancer
My maternal grandfather died from:
Cancer
My paternal grandfather died from:
Aneurism
My sister suffers from:
Lichen Sclerosis
((hugs)) Very well said.
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