The Story of my RARE Disease Diagnosis // the years before FA

No video

The Story of my RARE Disease Diagnosis // the years before FA

Рет қаралды 1,895

4 жыл бұрын

In this video, I share the story of my Friedreich’s Ataxia diagnosis. Finally being diagnosed with a rare disease, after years of anxiety, shame, and confusion, is actually somewhat relieving. It’s validation that you weren’t doing anything wrong. Watch this to learn about the challenging years leading up to my diagnosis.
If you would like to read the blog post, here is the link:
www.mydarlinglifewithfa.com/t...
Better is Better Podcast:
open.spotify.com/show/628YVNF...
/ betterisbetterpodcast
Did any of this resonate with you? Let me know in the comments xx
SOCIAL MEDIA LINKS:
INSTAGRAM: / kelbarendt
TIKTOK: www.tiktok.com/@kelbarendt?_d...
PINTEREST: / kelbarendt
FACEBOOK: deactived for now :). (maybe forever)
email: kellyandfa@gmail.com
SHOP ALL MY AMAZON PICKS HERE: www.amazon.com/shop/kelbarendt
MUSIC:
Music by Ashton Edminster - Break the Distance - thmatc.co/?l=0B470077
Music by Löwe - Clear Sky - thmatc.co/?l=A8021A64
Music by Löwe - Clear Sky - thmatc.co/?l=A8021A64
Music by The Lulls - Light in the Fog - thmatc.co/?l=39A1594E

Пікірлер: 34

@NoWastedCalories 4 жыл бұрын

My wife has FA, she is now 47. Watching you is like looking back in time. Thanks for putting yourself out there for others.

@kellyfa1774 4 жыл бұрын

It's fascinating how everyone with FA (or those who know someone) have such relatable experiences

@raquethead5898 4 жыл бұрын

I cant imagine going through all that, could not even fathom that weight being lifted off of you when you got your diagnosis. Thank you for these videos, I'm sure you are giving hope to someone that is having the same issues.

@kellyfa1774 4 жыл бұрын

It was definitely a huge weight lifted off of my shoulders, but still just the beginning of a roller coaster

@spiritofmiracles5496 3 жыл бұрын

I like everything about you. I first saw you on Tik Tok and followed you. I don't have a disease but in 2017 I had a Subarachnoid Hemorrhage (brain aneurysm) which the doctors gave me 2 brain surgeries which put me in a medically induced coma for 3 weeks. While in a coma, I had a stroke and was declared brain dead for 4 days. My family never pulled the plug because they had faith in The Lord. I have disabilities on my left side. I think your beautiful and I am inspired at how strong you are as a person. Please keep making videos, I believe they are inspirational to others and to myself.

@ColeKeleher 4 жыл бұрын

You are an inspiration.

@Geeforce252 4 жыл бұрын

Love your telling of your condition hate the reality of what you’ve endured love, hope, strength and happiness to you.

@joemartinez9023 3 жыл бұрын

Omg! I was diagnosed with something else in Oct of 2010, someday I will share my story. To this day I’m fighting and your a true inspiration! So, howdy, from The Great State of Texas! Be safe!

@laurabrown557 4 жыл бұрын

Kelly, I am so inspired by your story. Not what is “wrong” with you but what is so very “right” about you. Your parents must be so proud of your bravery and leadership....So very cool

@kellyfa1774 4 жыл бұрын

thank you, Laura!! So appreciative of your kind words

@deonpienaar4705 4 жыл бұрын

Hey Kelly you are an amazing woman and I have a lot of respect for you, even if I don't know anyone with FA. May God bless you and keep you strong 🙏

@ruthperez5380 4 жыл бұрын

Kelly!! You are a beautiful wonderful strong woman 👩 Thank you so much for sharing your story. I have a daughter with a neurological disease called CADASIL and as a mother I know the struggles. My daughter is 40 and she was diagnosed with MS when she was 36 but about a year ago they finally diagnosed her with the right rare disease. Thank God she has a husband that stands by her and my two amazing grandson and granddaughter. We are also catholic and I can totally relate with what you shared. God bless you🙏🏻🙏🏻🙏🏻🙏🏻 PS I love your TikTok videos. My granddaughter introduced me to TikTok 😂

@Kexlar 4 жыл бұрын

Hey Kelly hope you and your family are doing well. Another great and informative video. Please keep these coming, look forward to these.

@CarlosGarcia-fr7mq 4 жыл бұрын

This is mental endurance!!! Thank you!

@alexandraestrella71 4 жыл бұрын

Hi Kelly! It is really great to find your video. I have SA-3 which is a similar condition and is also an Ataxia. I relate to what you said because I also find it so hard to deal with the thing itself, the tiredness, the struggle to walk in line, and at the same time to deal with the consequences of it, like, convincing myself that I don't have to fear the future or getting up every day and try not to despair. All of that is very hard, but for me, what really makes me sad and sometimes feel like I am worthless is because as an invisible disease people stare at me like I am doing something wrong or perhaps I am a drunk person. Also, I drop things or fall on the street and people mostly look to the other side like nothing happened. It hurts a lot to be judged. But it is very warming to find someone who understands. If you need someone to talk to when things get unbearable feel free to talk to me 😊 Take care! 🌼

@charlottebarrow7790 4 жыл бұрын

Such a lovely video, so interesting to hear your story :)

@kellyfa1774 4 жыл бұрын

Thank you, Charlotte!!

@lauratobia6593 4 жыл бұрын

I do

@simonstar2000 4 жыл бұрын

I will be very happy to work with you to see if you can get more control over your body.

@ovaiskanoje9127 4 жыл бұрын

hi, kelly I am ovals from India.i am also diagnosed with FA. I really don't know where to get the treatment of FA.please help me

@kellyfa1774 4 жыл бұрын

Curefa.org has great resources

@jackanator1518 4 жыл бұрын

Your so pretty!!! 🧡🧡🧡

@giorgiozazueta1159 4 жыл бұрын

Hi Kelly, i don't know speak english, but i am tour New fan, be Strong....

@simonstar2000 4 жыл бұрын

Hi Kelly

@johngrober6244 4 жыл бұрын

❤️❤️👍🏻👍🏻🙏🏻🙏🏻🥇🥇😃😃

@alicianance7866 3 жыл бұрын

My name is Alicia I have FA to I can relate what you were saying because I went through the same thing all the teasing and picked on in school but now that i’m 47 now I have the permanent use of a wheelchair now. People seem to be more considerate now than what I did went through in school because I walked funny or I would trip over the air(as you would say) I just wish that I had someone to talk to because going to school was a very hard Time for me I had Close friends in school that knew about my disease but everyone seems know especially the ones I went to school with but when people make fun of you it makes you feel like you are secluded and you don’t want to tell them what is going on with you but I have A Facebook page do you? I would like to ke Friends with you if that’s possible.

@simonstar2000 4 жыл бұрын

Have you try to do hypnotherapy???

@kellyfa1774 4 жыл бұрын

Simion N. Osan I have not! What is it?

@simonstar2000 4 жыл бұрын

@@kellyfa1774 Hi Kelly, FIrst of all I would like to introduse myself. I am from Romania and I did study Hypnotherapy in US Albuquerque, Initialy school was in Santa Fe & after has been relocated in Albuquerque New Mexico. Hypnotherapy is a natural state of mind in which we start to bring the functionality of the brain trought the all four frequencis of the brain from Beta to Theta were brain functionality it will be in his natural state were we where when we were babies in develop state, when we where growing and in that frequency Theta, which it is our target, where our brain start to work for his body. However we can get in touch via whats up, messenger or Skype, in order for you to find answers to your questions. I will be more than happy to work with you and I can tell you that I have worked with a person with a very sever state of his Parkinson disease and he had a very supriseing efect