Thursday, September 18, 2014

A letter to the Show Biz Peeps

Dear creators of Red Band Society,
   I watched the show and I was kept entertained.  It has a fun group of characters and is interesting to watch.  I also agree with the message that you can still have fun and be happy despite having an illness.  However it is completely unrealistic and that is a huge problem.      
     Please make your show realistic or please take it off the air.  As a Cystic Fibrosis and Cancer patient, who has also been kept in a coma after my lung transplant, and who as a child stayed on the same floor as (and even sometimes shared a bathroom with) the eating disorder patients I beg you to make a change.  You are doing a huge disservice to the medical community especial that of Cystic Fibrosis(CF).
    Cystic fibrosis is a disease that does not get a lot of air time.  The CF community has been very excited about what this show could mean for us.  Unfortunately I do not think anyone thought it would be bad, but it is.  Before CF was brought into the main stream when I told people I had cf they would be curious and ask what it was.  I then would have an opportunity to educate them on  this horrible childhood disease.  However, since the show people have heard of CF and think they know what it is.  Well thanks to the poor portrayal people will now assume it's not really a big deal, I mean Dash seems fine and he's at his worst since he's in a hospital, right?   Wrong so very very wrong.
     Having CF is horrible, you can't breath, you can hardly eat and you certainly aren't running around a hospital stealing cars and throwing helicopter pad parties.  If you are one of the "lucky" cfers to not have bad symptoms, you aren't in a hospital.  A real cfer in the hospital is weak, very thin, tired, struggling to breath and has a productive cough pretty much all the time.  Most are also on oxygen and all are on iv medications around the clock.  We have what is called a PICC line inserted in our arms for medication or a port if our hospital stays are long enough.  Hospitalized cfers also do neublizer treatments, which was shown slightly, and vest treatments several times a day, 4 in my case,  these treatments can last an hour or more and are given by respiratory therapists.  Many of us also have feeding tubes and are fed a special formula by a pump at night to help us gain weight (like I said we are super skinny).  In most cases hospitals have strict infection control rules for CF patients we are often not aloud to leave our room and in the cases where patients can leave they definitely must be wearing a mask.  This goes for cancer patients as well.  Both of these diseases allow a person to catch illnesses easily, cancer from the chemo and CF from all the mucous in the lungs, and hospital are basically one giant petri dish.
     I understand what this world (hospital life) is like and I know it would not make very good tv.  That being said it is still possible to have an entertaining show while portraying some realistic aspects of the disease.  First of all the patients need to dress down a little bit, this is not high school, it's a hospital.  We don't do our hair or wear make-up and nice clothes.  More like hospital gowns, pajamas and sweats and a messy pony tail (if we have hair, I now where hats!).  Yes we hospital kids often decorate our rooms but not as excessively as the one on the show.  Coma kids are definitely in a hospital gown and hooked up to a few more monitors.  Also hospital patients are there for a reason, meaning they get treatment, ivs, oral medications, monitoring vitals etc.  And last but not least (and probably not really the last problem either)  Sick kids wear masks, kids who can get sick easily also wear masks.
   So please help all of the children who actually live in hospitals by portraying their life a little more accurately.  Without some changes kids will be jealous of those of us who "get" to go to the hospital.  Having a chronic illness is nothing to be jealous of.    
                     Thank you Very Much,
                         Anna the lemon
       Cystic Fibrosis, Lung Transplant, Diabetes and Lymphoma
P.S. Leo's eyebrows are pretty much the bushiest eyebrows I've ever seen.  If he is that bald on his head you bet his eyebrows are at least somewhat thinned.

1 comment:

  1. I wasn't a big fan of how they portrayed the CF patient either. I stopped watching after the first episode. I mean I went to school in the hospital. Sometimes I wasn't too sick and was in for a "tune up", so I'd have more energy and could have more fun. So okay, I'll give them a little a wiggleroom... But this kid just seems unfazed by his CF at all. He's nonchalant about it all. I understand to make it a "TV Show" they can't have dash in an isolation room, which has been my hospital stays for the last 10 years. Most CF patients have to wear masks, etc. Even just a little more realistic features would help. By the way I don't think I've posted on here before. Nice to meet you. I have a CF blog too! I like your flower background, very cute! And Keep fighting CF & Cancer ( sorry to hear, but it seems you have a great attitude about it all & life ). Take care! Cheriz-