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Health and Wellness

National Rare Disease Day

Spreading awareness of rare & invisible medical conditions!

Emily Ramthun

Feb 28, 2017

University of Wisconsin Branch Schools

Jasmin Floyd

Today is National Rare Disease Day: a day all about spreading awareness for rare/invisible medical conditions!

January 30^th, 2017 will be a date I never forget, the day I finally had answers and my life changed forever (both good & bad). I was diagnosed with Ehler Danlos Syndrome (EDS). EDS is a genetic connective tissue disorder. Connective tissue is the “glue” that holds us together to support the skin, bones, blood vessels, other organs/tissues. With EDS, we often deal with chronic pain, soft/stretchy/fragile skin, over flexible joints, joints dislocating out of place frequently, and fragile body tissues/blood vessels, just to name a few.

I also have been diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia that affects the flow of blood through my body, which also effects my autonomic nervous system, causing portions of my body to not function correctly primarily my heart. Leading me to have fatigue, dizziness, fainting episodes, nausea, and brain fog just to name a few.

With having both conditions its often hard to explain what I go through daily. Its best to be thought of having the flu or a hangover 24/7, getting hit by a bus at the same time, feeling like a 45-year-old in a 20-year-old body, and the feeling that you are constantly disappointing people because you have to cancel plans at the last minute when you are in too much pain, too sick, or too depressed to leave your house.

During this past month, I have been going through the grieving process. Realizing that there will be things I won’t be able to do because of this diagnosis, the realization that I will never be “normal” and that my life will be different. But through this past month I have been blessed to have met amazing people, learned that I am stronger/wiser than I appear/think, and that my faith is amazing!

My goal is that through speaking out about my rare/invisible conditions (Ehler Danlos Syndrome & Postural Orthostatic Tachycardia Syndrome) that more attention is brought to it and research can be done on how we can improve the lives of everyone battling these conditions. I do not wish these conditions on anyone and hope that one day there is a treatment and cure! If you have any questions please contact me, I’m more than willing to talk about it. Please share & help spread awareness!

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This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.

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National Rare Disease Day

Spreading awareness of rare & invisible medical conditions!

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Or at least try to do.

1. I will wake up (sorta) on time for class.

2. I will look decent for class.

3. I will go to the gym more.

4. I will go to the library and study more.

5. I will meet new people.

For those long nights that turn into mornings when the struggle is real.

1. Walk in motivated and ready to rock

2. Disappointed you let it get this bad

3. Distracted: When a 10-Minute Break Becomes an Hour

4. When the Yearning for Sleep Sneaks Up

5. In the words of Lorelai Gilmore "Coffee, Coffee, Coffee"

Oh, so done.

You need sleep, but also have 13 things due in the span of 4 days.

1. When it's December 1 and you have seven things due, three exams, and haven't slept in three days.

2. So you stress.

3. And cry.

4. Then call your mom to cry some more.

5. After the pep talk, you feel determined to get everything done.

6. But, now you're tired.

7. And really hungry.

8. Suddenly, it's 2 a.m. and you have only written three sentences and your paper is due in the morning.

9. You've made it to Friday... somehow.

10. Then Sunday hits and you find yourself back at the Lib.

11. So you cry some more.

12. But, you fight through the tears to get everything done because you're determined.

13. In the end, you feel on top of the world because you made it through the last week of class alive.

14. But, now it's finals week so good luck.

The ultimate list and gif guide to a college student's brain during finals.

What does the world outside the library look like?

Can I read this entire book tonight?

I should have gone to class more often.

Did the professor even teach this?

What is the lowest grade I can get on this exam and still pass the class?

Should I just drop out of school now?

Finals are ruining Christmas.

Just wrote three sentences so time for a break.

Need. More. Coffee.

What is sleep?

I'm too stupid for college.

Brain hurts.

Time for a Facebook Break.

I think I'm dying.

When will I ever need this information in the real world?

I can't read any of my notes.

I need my mom.

When was the last time I showered?

I need study snacks.

The struggle is so real right now.

"I want to thank Google, Wikipedia, and whoever else invented copy and paste. Thank you."

1. I'm so tired. I need a nap. Maybe I can sleep with my eyes open in class? Or pretend I'm not napping?

2. We have a test today? Why didn't anyone tell me? Did I know this?!

3. Can I quit school yet? It's only October, and I need a vacation.

4. The struggle is so real.

5. I'm so broke. SOS.

6. Stressed? Eat everything you own in your pantry and stuff your face with all your feelings.

7. "Did we have anything due in class today? Homework? Quiz? Test?" "Not that I know of..."

8. I need food. Where is the closest place to get food? I need it stat.

9. This is the longest day of my life. I need a drink, or two, or three.

10. Sleep? What is sleep? What a foreign concept.

11. When someone suggests going and studying in the library, let alone studying in general.

12. When the cafeteria or student center is packed and you can't find a seat anywhere so you literally have to sit in an abandoned corner.

13. When you see someone you used to hook up with. They see you, and approach you; so you have to pretend like everything is normal.

14. When you get your exam and realize you didn't study as much as you should have.

15. When you crush it on an exam or paper that you totally bullshitted.

16. I need a grande, extra strong coffee to get me through today.

17. When the professor announces you have a project due the following week with no instruction on what it's on and how to do it.

18. Is it Friday yet? Where's the weekend when you need it most?

19. It's freezing in here. I feel like I'm sitting in an igloo. I should have brought a jacket or worn long pants.

20. Did I remember my book? Damn, I forgot the book, and of course I need it for that quiz in class.

21. I would pay a million dollars to not go to class today; or actually never again.

22. I need a hoverboard to ride to class. Maybe then I wouldn't be running 15 minutes late to class every day.

23. Oh she/he's cute! I wonder if they're single. Who are they texting? They're BF/GF? I wonder if they think I'm cute. Could they be a potential new bae?

24. Why is there never any parking? I pay thousands of dollars a year for one parking spot to be open.

25. When it feels like you've been in class for an hour and you look at your phone and it has only been five minutes (I'm crying on the inside).

26. When the professor asks if there are any more questions at the end of class and someone raises their hand.

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