An athlete with EDS and other rare diseases

By Maya-ray, EDS, Scheuermanns, BlueRubber Bleb Syndrome, United Kingdom, March 16, 2021

Me at the Freestyle Kayaking World championships in Sort Catalonia

I am 19 years old and a GB Team kayaker I write a blog on Facebook called Can u Kayak? That has lots of followers. I was diagnosed with EDS at about the age of 7 after seeing lots of different doctors, one of whom said there was nothing at all wrong with me and that I just wanted to be off school. I was later diagnosed with EDS by one of his colleagues and my parents put a complaint into the hospital about the first doctor. I after several more referrals was diagnosed with Blue Rubber Bleb syndrome a rare vascular disorder, Scheuermanns a painful disease of the spine where the spine doesn't grow properly. I have Dyspraxia too, I have Asperger and stomach issues which still haven't been explained possibly due to EDS. I had a tethered spinal cord and after surgery I was left with nerve damage to my bladder and left leg. 
 

I ended up being Home Educated because of my many issues and time away from school but this meant I was able to start College a year early and then went on to University. Throughout all this my passion has been kayaking, whilst also raising awareness of rare and invisible diseases with my blog. I qualified twice to represent team GB in two World championships with no concessions for my disabilities competing against able bodied athletes. I am also a qualified coach and will be working with the GB team coaches as soon as Covid allows to further advance my coaching qualifications. I am also a swimming teacher.

 

*Find others with EDS 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.