While sitting here watching your episode on Asthma I can’t help but feel the need to contact you. Asthma fits into the category of Invisible Illnesses, and in that category asthma seems to be one of the tiny ones in the big picture. I myself suffer from an invisible illness called Postural Orthostatic Tachycardia Syndrome, I’m 15 years old and have had it for over a year now. As my own invisible illness POTS isn’t life threatening, as it doesn’t have a way of being cured but can be treated there still isn’t enough information or education out there for POTS and many other illnesses! I myself went 3 months without being diagnosed and had to leave my state to find a doctor 5 hours away that could actually diagnose me. None of the doctors in my own state were educated enough to understand what I have. Because POTS can be treated doesn’t mean it isn’t dangerous however as it’s main symptom is fainting due to change of heart rate and blood pressure when changing positions, something many of us take for granted. I think if you’re going to broadcast Asthma as one of a deadly illnesses you have to take into consideration all the other illnesses too! Asthma can easily be treated with an inhaler or Nebulizer as my own sister has asthma and I’ve seen and stood by her side and know that with the right treatment and under a doctors supervision it can be controlled. Look at Mitochondrial disease though which keep in mind also falls under the category of Invisible Illnesses and Chronic Illnesses. Mitochondrial Disease kills more kids a year than childhood cancer yet our TV screens are filled with St.Jude and donating money when you merely mention Mito many people don’t even know what it is. Don’t get me wrong Childhood Cancer is awful and needs as much funding as we can get yet we have to keep in mind all these other illnesses that dominate children and change their lives some of which end theirs. As having an invisible illness myself I’ve connected with some of the most amazing people, their humbleness, their ability to wake up every day even though many of them know that this might be the last day they do awake here on earth! Although my Chronic illness isn’t life threatening and does in fact have ways of treatment many of my friends I’ve made in the Invisible Illness community do have life threatening illnesses. For example my friend Michaela (15) who has Gastreoparesis (paralysis of the stomach) her 7 year old brother Tyler is fighting Mito and had his first surgery when he was only 36 HOURS old! As I type this e-mail to you now Tyler is in the hospital. Every 30 minutes in the US a child is born who will develop Mitochondrial disease by age 10, and most with it don’t even live past their teenage years. So how do you cure it? You can’t. How do you treat it? You can’t. You just have to learn to live with it knowing that in this vast world of medicine their still isn’t a way to fix it. Let’s look at another one Mastocytosis. Take my friend Brynn she’s 20 when asking her to some it up she told me this: “Mastocytosis is deadly because it’s hard to diagnose. Anaphylaxis is one of the most dangerous symptoms. One of the most dangerous parts of Mastocytosis is is it’s unpredictability- patients allergies change from day to day basis, making it nearly impossible to be completely safe in any given environment.” Let’s consider Fibromyalgia, there’s over 100 different symptoms people can have when experiencing it! Fibromyalgia is it’s defined often as widespread pain that often occurs in all four quadrants of the body! Not one single person can have the same case, and the human body is affected entirely by it; cognitive, physical etc. As talking to my friend Kirsten, who is 23 and currently living with Fibromyalgia she says she went from “a very athletic person, to someone who couldn’t even walk around her own home.” She also says it’s caused her to lose jobs, quit school, and even lose friends.” Meet my friend Ellen she’s 21 and she has a brain tumor that can’t be removed. She’s had 15 brain surgeries and is undergoing 2 more in the next upcoming months. Every time Ellen gets Meningitis she has to have all the hardware in her head taken out. She’s more prone to meningitis and other illnesses because she has such a fragile immune system! Ellen has even had to relearn how to walk, lots of short term memory problems, speech problems, balance problems, and many more. So in the big picture I guess I’m emailing you to ask that you realize not only is asthma an invisible illness but so are all of the ones I’ve mentioned above to you plus so many more. You take people with invisible illnesses and you realize that they’ve formed this community. This community of people they can lean on, when faced with an invisible illness you realize that in the blink of an eye your life can be flipped upside down by something going on inside your own body that’s out of your control. You have to learn how to deal and live life everyday in your new body. What’s so amazing about this though is that people have come together to help each other out. To build each other up when so many times they’ve been shut down by doctors, and so many other things. Wether you take this e-mail to heart or not I ask that you realize how much awareness is needed for these other illnesses and that us kids and young adults can only do so much before we have to rely on others to donate/lend a hand to help us fund research, find cures, and in the big scheme of things make a difference for those who will eventually be born into the world of invisible illnesses who will someday face what we would never want to place on others. Many look for attention with their illnesses but few attempt to make a difference and actually set things in motion. Going out and e-mailing all of you at Dateline is indeed a very big shot as I am just one person with a few teamed up behind my back to help make an impact. If nobody makes an attempt to change things then everything will stay as it is, the same no difference. After starting a fundraiser called Support The Potsies I’ve begun to sell t-shirts to raise money for something called Dysautonomia International that raises money for Dysautonomia a category that POTS fits into. With $450 dollars raised so far I consider it a start as in the medical field it’s not a whole lot but with effort it will someday be a bigger amount providing more research opportunities and treatments! Thank you for taking the time to read this and giving me the chance to voice my opinion as I consider it one of the greatest things we have; opinion it provides us with uniqueness and a difference between each of us. I hope that you take something away from this wether it be big or small and realize that there is a big world full of other deadly illnesses as well that could use just as much awareness if not more. I’ve attached my blog link for further reference on POTS and other things related to it.
Thanks for your time,