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How do you define rare?

on January 20, 2012

http://www.youtube.com/watch?v=1FRC94_25kA

How do you define rare?  

rare/re(ə)r/

Adjective:
  1. (of an event, situation, or condition) Not occurring very often.

Prior to March 8, 2010, I never knew anyone that had a child with cancer.   I had “heard” of childhood cancer, read books about kids with cancer, watched tv shows.  I cried over the St. Jude’s commercials, and every year went to the “Scooper Bowl” to support the Jimmy Fund.  But, other than that, I never really gave much thought about childhood cancer.  Until that one horrible day in March, when the doctors said “I am sorry, but we found a mass in Alexander’s abdomen”.

There has been a lot of chatter on facebook the last few days. Some head of media relations, while posting his thoughts on the creation of a bald Barbie, actually said:

childhood cancer is exceedingly rare”  and in responding to the creation of a bald Barbie: “But could they end up being terrorized by the prospect of it in a far outsized proportion to their realistic chances? There is no reason to create this sort of fear,”

Needless to say this has caused a LOT of anger among the many parents that have children suffering from some form of childhood cancer.

While, yes, if you count all cancers as a whole, I suppose you could say that childhood cancer is “rare”.  But to the 46 kids a day that find out they HAVE cancer, and the 7 kids that will die EVERYDAY, “rare” means NOTHING!

Alexander had neuroblastoma, which IS RARE.   (from Wikipedia) :

Neuroblastoma (NB) is the most common extracranial solid cancer in childhood and the most common cancer in infancy, with an annual incidence of about 650 cases per year in the US [1], and 100 cases per year in the UK

Hmmm….rare but yet “most common” – how do those words even go together?

What can be done about all?  Well, some years back, it seems to me that breast cancer was such a “taboo” subject one that people didn’t talk about. Now, however, it seems as if there are pink things everywhere!  A whole month is dedicated to it, 2 day walks, etc.

Now, I am not proposing to turn everything in creation GOLD (I mean really, does a PINK Mixer, really do anything for breast cancer?)  But, perhaps, if there was more done to raise AWARNESS for Childhood cancer, then more FUNDS would be put out there to help raise money for research.  The more research, the more chances of finding treatments, and giving these kids a chance to grow up!

Some groups that focus SOLEY on Pediatric Research:

http://www.makenoise4kids.org/index2.php

http://www.beatnb.org/  (neuroblastoma focus)

http://www.alexslemonade.org/

http://www.cookiesforkidscancer.org/Default.asp

http://www.vai.org/Research/Labs/Neuroblastoma-Translational-Research/neuroblastoma-medulloblastoma.aspx

http://www.stbaldricks.org/

http://www.nballiance.org/ (neuroblastoma focus)

Here are some FACTS about Neuroblastoma and childhood cancer:

Neuroblastoma Facts

  • Neuroblastoma is a common and often difficult to treat cancer, the most common cancer in infancy. (UCSF)
  • In the United States, about 600 children are diagnosed with neuroblastoma each year. (UCSF)
  • It is the most common tumor found in children younger than 1 year of age.
  • Childhood cancer is the number one disease killer in children.
  • Neuroblastoma is the most common extra cranial solid tumor cancer in children.
  • Every 16 hours a child with neuroblastoma dies.
  • There is no known cure for relapsed neuroblastoma.
  • Nearly 70% of those children first diagnosed with neuroblastoma have disease that has already metastasized or spread to other parts of the body. When disease has spread at diagnosis and a child is over the age of 2, there is less than a 30% chance of survival.

 Childhood Cancer Facts

  • There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
  • The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
  • The American Cancer spends less than 70 cents of each 100 dollars raised on childhood cancer.
  • Cancer kills more children than any other disease, more than Asthma, Cystic Fibrosis, Diabetes and Pediatric AIDS combined.
  • Sadly, over 2,300 children with cancer die each year.
  • Every school day 46 children are diagnosed.
  • 1 in 330 children will have the disease by age 20.
  • Cancers in very young children are highly aggressive and behave unlike malignant diseases at other times in life.
  • 80% of children have metastasized cancer at the time of their diagnosis. At diagnosis, only 20% of adults with cancer show evidence that the disease has spread or metastasized.
  • Detecting childhood cancers at an early stage, when the disease would react more favorably to treatment, is extremely difficult.
  • Cancer symptoms in children – fever, swollen glands, anemia, bruises and infection – are often suspected to be, and at the early stages are treated as, other childhood illnesses.
  • Even with insurance coverage, a family will have out-of pocket expenses of about $40,000 per year, not including travel.
  • Treatment can continue for several years, depending on the type of cancer and the type of therapy given.

What Causes Childhood Cancer?

  • Every family is potentially at risk.
  • In almost all cases, childhood cancers arise from non-inherited mutations (or changes) in the genes of growing cells.
  • As these errors occur randomly and unpredictably, there is currently no effective way to predict or prevent them.
  • Most adult cancers result from lifestyle factors such as smoking, diet, occupational hazards and exposure to other cancer causing agents.

Cancer Research Funding

  • Nationally, childhood cancer is 20x more prevalent than pediatric AIDS.
  • Pediatric AIDS receives 4x the funding that childhood cancer receives.
  • In one month there are 2x as many deaths from childhood cancer as pediatric AIDS for the entire year.
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One response to “How do you define rare?

  1. Erin says:

    “In the U.S., a disease is considered rare if it is believed to affect fewer than 200,000 Americans. There are approximately 6,800 such diseases, according to the National Institutes of Health (NIH). While each disease is rare, when considered together they affect nearly 30 million Americans or almost 1 in 10 people. There are certain challenges that all patients and families affected by rare diseases share.”

    -from the N.O.R.D. (national organization for rare disorders) website rarediseases.org

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