Saturday, February 27, 2010

RARE DISEASE DAY, FEBRUARY 28, 2010

Denial is a powerful mechanism and the foundation of the saying “ignorance is a blessing”. In my many years educating against sexual violence, I dealt with it firsthand. I had people playing with their cell phones during my presentations, falling sleep, and even walking away. As the matter was only job related, I did not take these reactions personally. I was bursting people’s imaginary bubble of safety and they did not like it. Eventually, I knew they would get it. Today, my baby is one of the 30 million Americans affected by one of the 7,000 conditions labeled as a “rare disease” and I am up against denial again. The issue hits too close to home to have the patience to accept people’s indifference. According to the National Organization for Rare Disorders (NORD), some of the challenges that families afflicted by these conditions experience are: Difficulty in obtaining a timely, accurate diagnosis. Limited treatment options. Difficulty in finding physicians or treatment centers with needed expertise. Treatments that are generally more expensive than those for common diseases. A sense of isolation and hopelessness. I said yes to all of them!. Rare Diseases are considered “orphaned”, meaning that they affect too few people to warrant government-funded research. As I started to learn more about histiocytic conditions, the concept of our children suffering and dying in such small number that our tax money is not worth to be spent on finding a cure became more UNACCEPATBLE and ABSURD. We must make a change but how do we get public support? I started by thinking of my mind-set before JXG. What would have been necessary to catch my attention then?. After all, I was a “privileged” healthy women with a perfectly “privileged” healthy family and Rare Diseases could not been further away from my reality. Here are my answers: 1) I would need to realize that it could happen to me or someone that I care about. 2) The information would need to come from someone that I respect in a very “easy-to-understand” manner so I could remember it and 3) I would need to believe that my actions could make a difference. If you are reading this blog, you already covered point 1, so let’s talk about 2 and 3. It is nearly impossible to learn about all rare diseases so let’s pick one or two and process them so well that they became as easy to digest as baby food. This is how I explain histiocitosis conditions and JXG to my friends and family: “Histiocytic conditions are associated with an excess of white blood cells called histiocytes which function is to fight infections. They are part of the immune system but for some unknown reason they start clustering. In most cases, histiocitosis diseases attack children under 10 and some of them are life-threatening and need to be treated with chemotherapy or steroids. They are not the same as cancer though, one of the difference is that sometimes they can regress without treatment, like Santi’s condition. In the case of JXG, the histiocytes believe that foreign materials are in certain parts of Santiago’s skin and they accumulate one on top of another forming bumps. Sure, this is not the best medical explanation out there but people can understand it and therefore pass it on. Working on point 3 now, if we share our knowledge of rare diseases with one or two of our friends and they do they same with other friends, eventually will be a big group of people raising our voices and the Government will need to listen. Also, imagine how much comfort and support families that are battling theses conditions will feel just by knowing that they are not alone and that you took the time to learn about Rare Diseases. If we want to speed things up a little and be more aggressive, we can write a letter to our representatives or to the editor of you local newspaper (please visit our "Take Action" section). To close this article, I am attaching a link to a very powerful video that the Histio Hero Research Fund put on You Tube: http://www.youtube.com/watch?v=tuoqonZwlqg. For some people, educating themselves about Rare Diseases is a downer, they do not want to leave their happy bubble for a minute. But to me, the real downer happens each time a “privileged” healthy adult rather live in comfortable ignorance instead of helping sick children to find a cure.

*In memory of all the “Histio Angels” that lost their battle against Histiocytosis and in honor of all the “Histio Warriors” and their families that are still fighting it.

3 comments:

  1. Thanks, JXG is so hard to explain. I like the explanation you've posted here

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  2. I am glad you like it Skye!

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  3. Mari, very powerful video, thanks for sharing it and again, thanks for educating us... understanding what it is and what needs to be done is a big step moving forward... no estan solos! - Lau

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