I believe in strength and will-power. I believe a person can be as great as they believe they can. I am 20 years old suffering from multiple horrific incurable rare diseases. Ehlers-Danlos Syndrome, Fibromyalgia, Postural Orthostatic Tachycardia Syndrome, Long QT Syndrome, Severe Asthma, Scoliosis, Seizures (stopped around age 12, however there is small chance something could trigger it again), Severe Gastrointestinal inflammation and delayed motility, and many more issues caused by the disorders listed above. Through all of this the day that sticks out the most was about two years ago when I received my official Ehlers-Danlos Syndrome diagnoses. That day my life both ended and began in one short breath. I remember walking out of the office in tears. On one hand I finally had a name for all of these terrible things that kept happening to my body. And I could finally get the medical care I so desperately needed. But On the other hand I was just told I have a genetic mutation that is incurable. I will be in pain suffering with this progressive illness everyday for the rest of my life. At least my other conditions,although incurable, have treatment options. I could have given up on this day. I could have let my illness dictate who I am. Instead I gathered all the strength I could muster and promised myself this was just the beginning. I will succeed. I will not let my illness control me. I will achieve the higher education I strive for. I will become a neuropsychologist and help others suffering from chronic illnesses. I can because I believe I can!
11 Comments
Kylie White
9/24/2015 04:52:01 pm
Thank you Courtney! It is a struggle but I will succeed with the support of wonderful people like you.
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Julie Lor
9/24/2015 09:34:23 pm
Omg I love this and solute you for being so strong. Keep your head up♥
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Kylie White
9/25/2015 07:52:57 am
Thank you. <3
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Kylie White
9/26/2015 10:54:24 am
I would like the input from my reader's on the following three questions:
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Art Gandy
9/26/2015 06:39:30 pm
Yes, yes, and YES! Your story is amazing. I think you could spice it up a bit by mentioning how the blog you made for your illnesses helps others and helps you to cope.. You could get this published. Mangini said they have to be 500 words maximum, so I don't know if adding to it would be a good or bad idea.. But your story is inspirational.
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Kylie White
9/28/2015 04:36:30 pm
Great! Thank you, I will think about editing it slightly. I really appreciate the feedback. I'm glad to hear you find my story inspirational. I have struggled to cope until recently. I realized I can use my pain to do amazing things, to help other people.
Courtney
9/28/2015 10:27:15 am
Kylie-
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Kylie White
9/28/2015 04:42:55 pm
Thank you Courtney. I will revise with details. Great idea about using a video. The majority of people I spend my time talking to are also medical professionals or other "Zebras" as the medical community calls Ehlers Danlos patients. Very few know what EHlers-Danlos Syndrome is and I am very aware of this. But I often forget not many people understand all of the other medical terms and conditions I tend to talk about.
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Lin Yuan
9/29/2015 01:02:19 pm
I am so moved by your story and proud of being classmates with you. I expect to read your personal stories more and more. Striving for whatever you pursue.
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Kylie White
9/30/2015 11:16:12 am
Your kind words mean a lot. Thank you. I also am glad to have a class with you. Your post are very inspirational. Keep being awesome!
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AuthorI am a writer striving to reach higher education. Please join my journey in showing the world having a disability does not define the person. Archives
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