Friday, July 30, 2010

Why we are Advocates

This is the last post in my series inspired by Lorenzo's Oil, the film that depicts one family's struggle with Adrenoleukodystrophy. ALD is a rare disorder affecting approximately 1 of every 42,000 male births. It is a devastating disease that without treatment usually progresses toward death in a few years. Among those with a pragmatic, cost-benefit analysis worldview, it might seem irrational to spend time, money and resources to study this disease or to seek anything beyond palliative treatment for those who are affected by it. In my opinion this is both callous and short-sighted. I think ALD is an excellent case study for why we advocate for anyone with special needs.

First, if you've read many of my posts you know that a big part of my perspective comes from a pro-life foundation. The great philosopher, Horton the Elephant, taught many of us as children that, "A person's a person no matter how small..." and it really is that simple for me. As long as there is life, we value, respect, and preserve the individual, no matter how small, ill, challenging or feeble. We find ways to support, educate, give comfort to, and encourage each person. Toward the end of the progression of Lorenzo Odone's struggle with ALD he was unable to breathe without assistance, he could not eat, he could not speak, and had only limited voluntary movements, but he struggled to stay alive, and he survived far beyond everyone's expectations. Some may ask, "What did he contribute to society?" and my answer is:
  • Inspiration to continue the fight - How many people have seen this movie and gone on to face their own challenges, or the challenges of their loved ones with a new and stronger will to succeed. I know when we first learned our daughter's diagnosis I remembered Lorenzo's story, among others (like Helen Keller) of individuals with special needs that seemed almost insurmountable. Yet with the love, support, and advocacy of those around them they did overcome, in some tangible ways, and in some ways more spiritual and eternal. It gave me hope at a time that otherwise seemed very dark and bleak.
  • Information about treatment options that did not exist before - Lorenzo's parents worked together with medical researchers to develop a treatment (Lorenzo's Oil) that was not available previously. They turned their desperate search for therapy into an option for early intervention in the course of the disease. My understanding is that this treatment is now in full clinical trials, but meanwhile many other young boys have seen some benefit from the Odone's quest.
  • Instigation of new research efforts that will benefit others - The Odone family found that using Lorenzo's Oil arrested the degradation of Lorenzo's nervous system, but it could not undo the damage that was already done. The myelin coating around his nerves was already damaged and there is no known repair mechanism. Again, some would throw up their hands in despair, but the Odones determined to keep searching. They established the Myelin Project, whose sole objective is to search for treatments that repair and regenerate myelin. This is where the cost-benefit analysts may finally see the pay off. Myelin degradation is not unique to the disease of ALD. Some of the diseases we already know about include:

multiple sclerosis
idiopathic inflammatory demyelinating diseases)
transverse myelitis
Devic's disease
progressive multifocal leukoencephalopathy
Optic neuritis
other Leukodystrophies
Guillain-Barré syndrome
chronic inflammatory demyelinating polyneuropathy
anti-MAG peripheral neuropathy
Charcot-Marie-Tooth Disease
Vitamin B12 deficiency

In short, by studying the underlying causes and symptoms of one rare disorder we can learn information and treatment options about at least a dozen others.

So why do we advocate? Because it works!


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