Scoliosis Awareness Month – What Is It Like to Live with Scoliosis

It is Scoliosis awareness month, so myself and Amanda are teaming up to let others know about the condition. Amanda is the definition of  inner and outer strength. She amazes me all the time with her ability to make it seem all so simply and effortless. Just like me, she likes to get things done by herself in her own way. However, its hard to know what to do around someone with a physical or mental condition.

This is why I teamed up with her to give us a little inside of what its like to live with Scoliosis and how others can help improve their living condition.

 

Who is Amanda?

Amanda is a passionate London base freelance photographer, collector and dancer. I graduated from the University of  the Arts London, where I studied Fashion Styling and Photography. Charity organisations such as Smart works and Diversity Matters are volunteer programs that I am heavily involved with too.

What is Scoliosis ? 

Scoliosis is the curvature of the spine. My diagnosis is a bit more extreme as my spine curves in 2 directions, towards the left and also outwards.

                                                           When did you realise you had it?

My mum noticed it from when I was a baby, because I kept sitting and lying differently, my head would always lean to the side. After that, I was diagnosed with Scoliosis at about 2 years old.

How has This affected your life?

To me, its become the norm as I have lived with it practically my whole life. Getting out of breath plus being filled up too easily are also the side effects of  how my ribs developed. This development causes my organs to squeezed in together. Eating and daily activities like running for the bus is difficult but I just go for it! 

 Often, I felt left out when I was younger as I was restrained from doing a lot of things by the doctors. Strenuous activities like sports or gymnastics where such things I had to give up for my own safety.

                                                 What treatments do you require and how often?

In total of 8 years, I had to wear a brace which was very uncomfortable. Also had an operation when I was about 6 to try correct the curve in my spine. Although this sadly proved  fruitless. Alternatively, at 9 years old  I had a spinal fusion where 2 rods was fixed to my spine.

This procedure took about 3 weeks; my body had to be stretched out to create enough space for the rod to be infused between my spine. Yes, painful I know! I stayed in the hospital for about a month and a half. However, I had to keep my plaster cast in for 3 months. This held my head/neck, preventing them from moving.

My annual check ups lasted up till I was 18 years old.  Now at 29, I have the option to remove the brace permanently if I wanted to.

What are the Long term dangers of  living with Scoliosis?

In very rare cases, my spine can continue to curve which in turn can lead to one becoming paralysed. Secondly, people with Scoliosis experience back pains; however this would differ per individual.

 Do People treat you differently?

A lot of the time they do. Some people will understand and some don’t or choose not to.

How do they treat you differently?

Most times I get stares or weird looks from people. Without given me the opportunity, most people say “no / can’t ‘ because of my disability. This affects every accept of my life, sometimes job opportunities other time hobbies i.e dancing. 

Lastly, I also feel ignored by the fashion industry. I and others alike are no where near their idea of  perfection. Hence getting something that fits right is always a struggle. Often I have to readjust  my garments for them to fit….lol good thing I studied Diploma in garment technology! We all come in different shapes and sizes, it would be great to also feel included by the industry.

Preferably, how would you rather yourself / others alike be Treated instead?

Just give us a chance. You ain’t seen my moves yet! Don’t stay focused on my outer appearance and assume I’m always in pain. Look at the Para-olympians for example; we all are more than our disabilities. I will let you know if I’m struggling, but till then #bentnotbroken! 

How can someone be of help to anyone with a similar condition?

Understandable, scoliosis is not very well known. Should you or anymore around you get diagnosed with it, try not to be afraid.  Through social media a lot of people share their journeys with scoliosis which has been really helpful and moving.

Anyone who really want to know about it have wealth of information to fall back on. Research and educate yourselves; also for those living with it do what makes you happy. We are all not very different to anyone else, treat us the same! 

Phew…. I do not know where to start after this interview. People with disabilities are such bada••! Now that we’ve heard straight from a survival, I hope we can all stop being so scared of the unknown and give everyone a Chance.!

Another thing we can also do is Share this to create more awareness with others…#bentnotbroken!

Find Amanda-Jayne Easmon on Social Media!

Insta: amanda_says_gracias |Email: aj_easmon@outlook.com |Facebook: Amanda-Jayne Easmon YouTube: https://www.youtube.com/user/kualitee88

Love Promise x 

 

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