Post 1: Who am I?

 

INTRODUCTION:

Hello! My names Olivia, I am 19 years old and live in the U.S. I have a rare neuromuscular disease called Friedreich’s Ataxia, also known as FA. It is a rare autosomal recessive inherited disorder that causes progressive damage to the nervous system. There is currently no cure. It manifests in many different symptoms.

You probably are wondering what my current symptoms are, as I would like to know if I was in your position.

My Symptoms:

  1. Gait disturbance (an ataxic gait)
  2. Balance disturbance
  3. Cardiomyopathy (thickness of the heart)(I have an implanted heart monitor)
  4. Slightly slurred speech
  5. My hearing is minimally impaired
  6. I have to wear glasses as I have a major astigmatism
  7. Scoliosis (I got my spinal fusion)
  8. Half of my stomach is paralyzed (not sure if its related to my FA)
  9. Loss of coordination and dexterity in my arms and hands.

(And more)

More about me:

I am a huge animal lover! I have 3 dogs, Louie, Luna, and Lucca. I also have 40+ ducks. That’s right, I said ducks. Almost all of them are Muscovy ducks, but for my 18th birthday someone got me 3 exotic pet ducks. Their names are Huey, Luey, and Duey and the girl, Luey, had 4 kids that will almost be a year old this year.

Your probably curious as to what started my love for ducks, well, I just couldn’t keep watching the babies keep getting killed off by birds, such as eagles and hawks, water animals, such as snakes, otters, iguanas, etc., it’s just heartbreaking. Some mama ducks lay eggs at my house and what I do is encage the area and when they are born I give them a pool, food, and extra water, so they grow a bit and are safe from predators. When they are bigger, I let them go, easier said then done.

I want to become veterinarian and specialize in waterfowl (ducks) and birds. Yes, I have FA and my coordination and dexterity stinks but it doesn’t stop me from doing what I always dreamed of doing.

FA is just something that is added to me, it doesn’t and will never define me. If anything, I’m beyond grateful I have it because I would never have met the amazing people I have today.

In conclusion:

This is just the beginning to a great thing. If you would like to know more about FA, such as trials go to the website: curefa.org.

Thank you for reading and I can’t wait to post more and spread awareness!

~Olivia 🙂

 

 

 

 

5 thoughts on “Post 1: Who am I?

  1. Honestly ur disorder doesn’t define who u are and I don’t care if u have a disorder or not u are a beautiful girl and no matter what u will always be special to everyone sure people may run away or call u names but in that situation the most amazing person is u they are worthless and pathetic to run away from a great girl like u u should be proud of yourself that u can actually deal with this disorder

    Liked by 1 person

  2. This is such a great read to understand more of what goes on with someone on a personal note as oppose to a google search. You keep being the best you in life and a insperation to many. Being a voice for those that cant or anxiety or fear keeps them from it.

    Like

  3. Loved reading your story and how you’ve gotten through adversity. Can’t wait for a part 5 on this wonderful journey!! ❤️ 💪

    Like

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