Monday, February 27, 2017

Rare Disease Day 2017 - and this rare disease wearer is very grateful to NORD

The National Organization of Rare Disorders (NORD) is holding its annual Rare Disease Day tomorrow, Feb. 28. According to their definition of "rare disease", it is "any disease, disorder, illness, or condition affecting fewer than 200,000 in the United States..." NORD keeps track of and shares information on over 7000 diseases and disorders, and is working to increase awareness about rare disorders, particularly how those of us handle life while wearing a rare disease (before and after diagnosis and treatment). This year's theme is Research, a topic near and dear to my heart, since I am only casting a shadow today because I was diagnosed & treated (and still experience annual checkups) by my research-focused heroes at Nebraska Medicine and University of Nebraska Medical Center.

I checked to see if I could locate statistics on the incidence of Adenoid Cystic Carcinoma.

  • I found this 2012 article that just might include my own 2016 diagnosis statistic: Adenoid Cystic Carcinoma of the Head and Neck: incidence and survival trends based on 1973-2007 surveillance, epidemiology, and end results data. (Note - table figures were corrected in this Erratum, published later in 2012-please check this out for correct figures.) Yep, ACC fits the rare disorder category - they picked out 3026 patients diagnosed with ACC in the head/neck in that 34 year span. The article has been cited 18 times by articles in PubMed Central, and around 97 times as recorded by Google Scholar - take a look if you want to check out more recent research on ACC. Remember - always discuss with your healthcare provider if you find anything in research articles that might apply to your own condition.
  • I found figures on a site maintained by the American Society of Clinical Oncology - Cancer.Net: 1200 people per year diagnosed. Sources for facts are listed as: Oral Cancer Foundation, and the Adenoid Cystic Carcinoma Research Foundation. 
  • According to Adenoid Cystic Carcinoma Organization International (ACCOI), who based their statistics on SEER data, ACC is diagnosed in 1224 of all people diagnosed with cancer in the US each year. They also show Australian figures for 2006-2010, showing an average of 81 ACC cases reported per year. (I am not a biostatistician, so I may have misinterpreted that table.)

If you have been diagnosed with Adenoid Cystic Carcinoma, there are communities on the Internet that exist to help you lessen your isolation. I have linked to some on the right side of my blog, and you can message me to ask me about other sources. You can also find a local library that offers consumer health information services, and get immediate access to quality, evaluated information that you can take to your healthcare provider for interpretation.

Cheering for all of us rare disorder-wearers, and thankful for NORD to keep the awareness level up. Especially cheering all ACC wearers, no matter where it was first diagnosed. I am heading for the 11 year marker since initial diagnosis, and planning to celebrate many more survival anniversaries.


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