At 16, I Was Diagnosed With EDS And It Changed My Life Forever

At 16, I Was Diagnosed With EDS And It Changed My Life Forever

It has changed everything.

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For as long as I can remember, I have suffered from chronic pain, injuries for seemingly no reason, and hypermobility. After 16 years of not knowing what was happening to me or why and countless trips to doctors in an effort to finally find answers, I was diagnosed with Ehlers-Danlos Syndrome.

Ehlers-Danlos Syndrome (or EDS) is a disorder affecting the collagen in your body causing it to be looser and more fragile than that of people without the genetic marker. Though it has been a few years since I was diagnosed and I have had plenty of time to adjust to life with a diagnosis, the things that most people don't know are still present in both my life and others who suffer from invisible illness.

Imagine this: it's 9 a.m., your alarm has just gone off and the sun is peeking through your window. Everything seems fine... until you stand up, that is. The moment your feet hit the floor you're overtaken with dizziness and pain, a feeling most people will never experience. That's what waking up with an invisible illness is like, not to say waking up is an easy task for everyone, but something so simple can truly take so much out of you when your body is working against you.

Now, despite such an unpleasant first feeling, life still happens around us. We drag ourselves out of bed and get ready for the day, pushing through the pain just to get through work or school. We still strive to be the best that we can be and will do as much as we can to accomplish that, we just have a few extra barriers blocking our paths.

Explaining invisible illness to those who don't understand is nearly as difficult as getting through the day. If I had a quarter for every time I've heard the words "But you don't look sick." after telling somebody I am, I would be rich. Illness does not have to be externally visible to be present, and that is the most important thing to recognize.

Often times, it takes multiple explanations, Google searches for visuals and trying to make your illness physically obvious for people to understand that you truly mean it when you say you can't carry that box of stuff for work or sit in the front of the room. Having to explain what you're feeling over and over again without success can be pretty taxing and sometimes even invalidating.

Something many people with invisible or chronic illness have taken to using as a metaphor for what life is like for us is the Spoon Theory. The easiest way to explain this theory is to imagine that every day you are given 12 spoons (less if you've been sick or have forgotten to take your medication) and for every activity you participate in, you have to turn in a given amount of spoons. Something simple, like brushing your teeth, would cost one spoon. The harder or more involved the task, the more spoons you have to give up. This theory is a perfect representation of life with chronic/invisible illness and truly helps those around us to understand what we feel daily.

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50 Things To Be Happy About

It's the little things in life.
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It is always easier to pick out the negatives in life. We tend to dwell on them and drown out the happy moments. I asked a friend to tell me something that made them happy. They sarcastically laughed at my question then thought about it for a minute. Nothing. But they could easily come up with things that made them unhappy. Then I read them my list, and they were smiling and laughing in agreement the whole time. There are so many more things to be happy and laugh about than we realize. After all- it's the little things in life that can mean the most! Here are 50 things that make me happy. What are your 50?

  1. The first warm day of the year
  2. Laughing so hard your abs ache
  3. Freshly washed sheets
  4. Looking through old pictures
  5. The smell of a coffee shop
  6. Eating cookie dough
  7. Reading a bible verse that perfectly fits your current situation
  8. Seeing someone open a gift you got them
  9. Eating birthday cake
  10. A shower after a long day
  11. Marking something off your to-do list
  12. Drinking ice cold water on a really hot day
  13. Dressing up for no reason
  14. Breakfast food
  15. Being able to lay in bed in the morning
  16. Finding something you love at the store
  17. And it’s on sale
  18. Cute elderly couples
  19. When a stranger compliments you
  20. Getting butterflies in your stomach
  21. Taking a nap
  22. Cooking something delicious
  23. Being lost for words
  24. Receiving a birthday card in the mail
  25. And there's money in it
  26. Finally cleaning your room
  27. Realizing how fortunate you are
  28. Waking up from a nightmare and realizing it wasn't real
  29. Fresh fruit
  30. Walking barefoot in the grass
  31. Singing along to a song in the car
  32. Sunrises
  33. Sunsets
  34. Freshly baked cookies with a glass of milk
  35. Summertime cookouts
  36. Feeling pretty
  37. Looking forward to something
  38. Lemonade
  39. Comfortable silences
  40. Waking up in the middle of the night and realizing you have more time to sleep
  41. Surviving another school year
  42. The cold side of the pillow
  43. The smell of popcorn
  44. Remembering something funny that happened
  45. Laughing to yourself about it
  46. Feeling weird about laughing to yourself
  47. Printed photographs
  48. Wearing a new outfit
  49. The sound of an ice cream truck
  50. Feeling confident
Cover Image Credit: Tumblr

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A Second Person Has Achieved Long-Term Remission Of The HIV Virus

A second man has had long term remission of the HIV virus.

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Over a decade after the first man, known as the Berlin Patient, was declared HIV-free, another patient may also be cured. Though it's too early for scientists to say for sure, the London Patient has been in a long term remission for around 18 months without the help of medication. Both men were treated with a bone marrow transplant. However, these stem cells carried a rare mutation in the genes that affect the production of the CCR5 protein, which HIV viruses latch onto to enter the cell. The virus cannot latch onto the mutated version of the protein, thus blocking its entry into the cells.

With the transplant of these HIV resistant genes, the body effectively builds a new immune system free of the virus.

After the Berlin Patient went into remission, scientists tried and failed to replicate the cure and were unable to until the London Patient, whose HIV count has reduced into undetectable numbers. While this is extremely helpful, bone marrow transplants are not a viable option to cure all HIV infected people, as it is an extremely risky process and comes with many side effects. Even so, scientists are developing ways to extract bone marrow from HIV infected people, genetically modifying them to produce the same mutations on the CCR5 gene or the inability to express that gene at all, and then replacing it back into the patient so they can still build resistance without the negative effects of a bone marrow transplant. There have also been babies whose genomes have been edited to remove the CCR5 gene, allowing them to grow up resistant to HIV.

This does not eliminate the threat of the HIV virus, however.

There is another strand of the virus, called X4, that uses the CXCR4 protein to enter the cell. Even if the editing of the CCR5 allows immunity against one strand, it is possible for a person to be infected with the X4 strand of the virus. Despite this, immunization against one strand could save a countless number of lives, as well as the vaccine that is currently in the stages of development for HIV. Along with the London Patient, there are 37 other patients who have received bone marrow transplants, six of which from donors without the mutation.

Of these patients, number 19, known as the Dusseldorf Patient, has been off anti-HIV drugs for 4 months. It may not be a complete cure, but it is definitely a step in the right direction.

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