When I heard Michelle Obama at the Democratic Convention, I was blown away by the clarity of her ideas and by the power of her message.
This was topped off by the fact that she drew inspiration from her late father, who apparently struggled with Multiple Sclerosis (MS).
It was shocking to hear MS integrated into her speech because the disease seemed to be "off topic". The subject was where we go as a nation under a President Barack Obama.
But there was MS, a disease that Michelle Obama's father fought while working so hard for his family: MS- a great obstacle for her father, but a lightning rod for Michelle. It no doubt upped her appreciation for her father's devotion to her family. Not only did he have to struggle as a blue-collar worker, not only did he have to fight racism (implicit in his story), but her father had to battle demyelinating disease.
I recall one of the first patients I saw on the MS Unit at Albert Einstein Hospital in New York in the 1980’s. She was a Medicaid dependent African-American young woman hospitalized with blindness, quadriplegia and bedsores. However she was fully in tact mentally if not spunky. How that was possible, I was not sure in that the neurological devastation had been so rapid. She would challenge doctors who she sensed or heard entering her room with remarks such as “What are you looking at?” She was attractive but did not let her visual impairment deprive her of an intuitive suspicion about male visitors. Nurses would say they drew inspiration from her in their battles against ogling physicians.
Unfortunately, this young lady was overwhelmed by a disorder called Devic’s Disease (Neuromyelitis Optica- NMO) which is a demyelinating condition similar to MS (with a predilection for blacks, Japanese and Pacific Islanders) which targets the optic nerves and spinal cord leading to severe disability that can include life threatening respiratory failure. Antibodies (IgG) to aquaporin-4 (AQP4), the central nervous system’s predominant water channel protein, are key biological markers for this disease (distinguishing NMO from MS where such antibodies are not prominent). There can be “incomplete forms” of NMO where only recurrent myelitis (spinal cord inflammation) or only recurrent optic neuritis can be seen.
Pittock et al from the Mayo Clinic have recently noted that NMO patients can also have brain abnormalities on MRI that can mimic MS, highlighting the importance of evaluation for the AQP4 antibodies in relevant cases; this can impact upon treatment approaches.
Naismith et al from St. Louis have noted that compared to Caucasians patients, MS in African Americans is characterized by a higher incidence of cerebellar dysfunction and a more rapid accumulation of disabilities. His colleague Rinker has found 1- Spinal fluid antibodies in blacks with MS are higher than in whites and 2- Blacks with MS progress to ambulatory assistance faster than whites.
Cree et al from San Francisco noted that compared with Multiple Sclerosis in Caucasian Americans, African American patients with MS have a greater likelihood of developing opticospinal MS and transverse myelitis and have a more aggressive disease course.
Access to care for African Americans with MS, NMO and other illnesses often lags behind Caucasians and warrants major national efforts to improve it.
Stevie Wonder is working on a new album about his blindness “In the Eyes of Wonder”. We need to open our own eyes and do more than wonder about how to improve the plight of the poor with demyelinating disease whether they are black, white, Hispanic or Asian.
Published On: September 08, 2008