MDA Mailbag Fall 2011

by on October 1, 2011 - 9:11am

QUEST Vol. 18, No. 4

Letters to Quest: Getting a long-awaited diagnosis * LBMD2I website * Frivolous ADA lawsuit * Drop 'disease' in Charcot-Marie-Tooth name

Finally, a diagnosis

Thank you for your publication. In the fall of 1997, I sat in the neurosurgeon’s office awaiting the results of my MRI. Having dealt with back and hip pain for several years, I thought maybe I was having disk problems. I never expected to hear, “The good news is that the disks are fine; however, your MRI is abnormal and I’ll refer you to a neurologist.”

During the past 14 years different specialists have evaluated me. All the physicians felt that it was an autoimmune disorder. One diagnosis was polymyositis, but when I didn’t respond to treatment, I was told it might be inclusion-body myositis. One physician thought it was limb-girdle.

One evening I was reading the Winter 2011 Quest magazine and noticed the article for a clinical research study looking for people with undiagnosed muscle problems (Clinical Trials and Studies Winter 2011, Quest January-March). Only through reading the Quest magazine did I have knowledge of this study. The results have provided me with a confirmed diagnosis of late-onset Pompe disease. Despite being told I have a rare genetic muscle disorder, I am grateful to have an answer. We are now busy seeking treatment.

Todd Garber
Hermon, Maine

 

LGMD2I website

I have limb-girdle muscular dystrophy type 2I (LGMD2I). I have created an informative website on the condition, and would like to invite others who are affected by the disease to help form a community to support each other by sharing their journey.

Lacey Woods
Stanwood, Wash.

 

Frivolous lawsuit

I read a section in the most recent issue of Quest magazine about a man who sued Chipotle Mexican Grill because the counters were too high and he could not see his burrito being made. (ADA Roundup 2011, Quest, July-September)  I can’t believe Quest would publish something so ridiculous and then try to pass it off as a big victory for civil rights. It’s terrible that he would sue over something so stupid.

Who cares if he can’t see his food being made? There are thousands of restaurants he could go to where he couldn’t see his food being made, so what’s the big deal if he can’t see it at Chipotle Mexican Grill? Even if it is unfair and he felt he was being discriminated, it’s not something to sue over. One of the first things you learn as a disabled person is that there are some things you just cannot do, and in this case watching your burrito being made is one of them.

After a few minutes of searching Google, I came upon [an article saying] “ ... A federal judge ruled against him, saying Antoninetti had sued dozens of other places for access violations and dropped the suit after getting cash settlements.” It’s obvious that the man was just abusing his disability for money. Because of people like him, when people have a genuine lawsuit, judges are more likely to dismiss it because they figure it will be nonsense such as this. I sincerely hope you print some kind of retraction.

Jake Wedlick
Taylor, Mich.

Editor’s note: The Ninth Circuit Court of Appeals overturned the federal ruling against Atoninetti.

 

Drop ‘disease’

Thanks for your spotlight on Charot-Marie-Tooth in the summer issue. I have been living with CMT 1A all my life and as my symptoms progress, I am eagerly awaiting the development of a treatment.

May I suggest that in future issues you refer to my neuropathy as Charcot-Marie-Tooth Neuropathy, if you must add anything beyond CMT? The name is confusing enough without adding “disease” to the end. Although technically the term “disease” might apply to any malady, in casual use “disease” is often associated with conditions that may be contagious. I would not choose to be around people with “diseases” or send my child to school if I knew students with “diseases” were allowed to attend.

Are there any other maladies that have “disease” tacked on to their name? Not any of the diseases we take immunizations against, not cerebral palsy, not any of the various cancers, mental health conditions or nongenetic neuropathies. Thank you for considering my suggestion.

Susan Salzberg
Chapel Hill, N.C.

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