Braver each year

By Brittney, Ehlers-Danlos syndrome type 4, United States, February 25, 2021

Braver each year

Each year I've learned more about living with a illlness that could end fatal , learned just to do the most enjoyable and normal things but yet prepare for the totally unexpected. Learned to always have that GO bag on hand for totally unplanned and unexpected admissions , always carry Med lists since this last time we needed an ambulance (only the second time ever) , and am amazingly better at accepting my medical aides well tools , before I was totally ashamed and embarrassed by them (I mean I'm only 31 and my home at one point looked like a senior center I'll explain more in a bit) but now I see there all a part of me and something allowing me to live the BEST me! 

the last year has been scary and NOT just because of the world we're currently in. Everyone with EDS knows in time our bodies will deteriorate so we live our best zebra life , I have and do I cheerlead and go out with my husband , and was returning from an anniversary trip (1year wedding) when the incident happened thankfully to. I was standing talking to his mother one moment and seconds later wasn't standing I was on the ground looking up and the car , yes look up and , my leg had given out on me , and I was now on the pavement below , I destroyed my leg breaking the bone , over stretching the Achilles and tearing both lateral ligaments. As a cheerleader the injury catastrophic as rare warrior even more horrific , possible walking ending. Normal person recovery 10-12 weeks , mine , well it happen July 1,2020 and it's now February 2021 and I'm not healed with a estimate of another few months PT so we'll see , and one lateral ankle reconstruction with anchors later. I Now walk with a walker , have a medic alert , knee scooter and the shower chair (right after surgery we had the wheelchair and camode) and lastly my trusty cane. Post surgery I ended up critically ill near septic with a bowel obstruction , it was a scary long road back. 

It's been a reminder that life with EDS is a hard unpredicted challenging road BUT rewarding to. I'm still here . I can keep showing the world zebras have more to offer and were out there and my fight is FAR from done ans I CANT wait to see what the remainder of 2021 brings me 

 

*Find others with Ehlers-Danlos syndrome on RareConnect, the online platform for people affected by rare diseases

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.

Stories Of The Week

My family My family

Xander's Journey finding a cure

Yohanna, SLC6A1, United States, March 1, 2021

My name is Yohanna. I have a 3-year-old name, Xander. He was born healthy, and everything was great until he reached six months. I noticed he was not getting his milestones, and of course, I was conce...

Mia Mia

Mia

Maja, 1p36 deletion syndrome, Croatia, February 28, 2021

My daughter Mia was born with congenital cytomegalovirus infection and from birt we new she will face a lot of obstacles in her life. We were told she will never walk, talk etc. But she was little war...

SuperBouli SuperBouli

Story of SuperBouli

BOULI, Sandhoff disease, infantile form, Lebanon, February 27, 2021

SuperBouli for rare disease day 2021Read my story or watch the video to know why I am superRarehttps://youtu.be/Rw4hV_sk6VQHello!!! I am Bouli, and this year, on the 28th of February, the rare disease...

Photography credit: Oumayma B. Tanfous Photography credit: Oumayma B. Tanfous

Keep on Smiling

Maria, Beta-thalassemia, United States, February 25, 2021

Keep On Smiling“Keep on smiling” the young doctor said to me at an impressionable age of ten. Those words, at that time, influenced the rest of my life. I was born with a rare disease, Beta Thalassemi...

On my Instagram-account (@bibi_wheelchair_traveller) I raise awareness for the disease ALS, I share my thoughts on disease and disability and present our way of wheelchair-traveling. On my Instagram-account (@bibi_wheelchair_traveller) I raise awareness for the disease ALS, I share my thoughts on disease and disability and present our way of wheelchair-traveling.

"Juvenile ALS" occurs in less than 1 out of 1 million people

Bibi, Amyotrophic lateral sclerosis, Austria, February 24, 2021

Hi, I’m Bibi, 32 years old, from Austria (Europe) and was diagnosed with ALS (Amyotrophic Lateral Sclerosis) at the age of 18.My first symptoms started to show in 2005 when I was 16 years old. I notic...

Hagamos visible las enfermedades raras... Hagamos visible las enfermedades raras...

Nahiara... el amor en persona

Claudia, Williams syndrome, Argentina, February 24, 2021

Mi nombre es Claudia, mamá de Nahiara,  ella fue diagnosticada a los 7 meses de edad con Síndrome de Williams, una detección en el cromosoma 7q11.23. Dentro de las características principales de éste ...

Palden and Mom Palden and Mom

The Glimpse into Palden's Journey as the First SMA Patient of Bhutan

Ugyen, Spinal muscular atrophy with respiratory distress type 2, Bhutan, February 22, 2021

Palden is a 12 year old girl from Bhutan. She was diagnosed with Spinal Muscular Atrophy (SMA), Type II, at the age of 9 months, as the first case and one of the only two diagnosed in the country. SMA...

X

Share your story




(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.