Living with Osteogenesis imperfecta- Deborah’s story.

This was a very hard interview. Deborah is not only my sister but one of my best friends too. She kept on goofing around. The interview was three days long😂 We finally finished.

Enjoy her story😊❤

IMG_20180102_202005.jpg

What are your full names?
Deborah: I am Deborah Chilinda.

How old are you?
Deborah: I am 22 years old.

What do you do for fun?   Deborah: [laughs uncontrollably] I love ‘mooooozik’ [laughs again]. I am full of life. I love music. I love visiting new places. I love going out to eat with my family. I enjoy treating myself to nice meals. I enjoy TV. I always look forward to taking walks with my family to see the sun set. I love life basically.

IMG_20180102_202040

What is osteogenesis imperfecta?Deborah : Osteogenesis imperfecta (OI) is a disease that causes weak bones that break easily. It is also referred to as brittle bone disease. I have had fractures a lot. Sometimes the bones break for no known reason. 

There are several types of OI. I am not sure yet what category I fall in. OI has several symptoms like malformed bones, short or small body, barrel shaped rib cage, triangular face etc.

What causes it?                                   Deborah: it is hereditary, other times it just happens.

You came up with an awareness program, please tell me about it.
Deborah: Oh yes. I started it with my sister. The thing is, osteogenesis imperfecta is not common, especially in my country. I have actually only met two other people with it. I am sure there are others. I’ll find them! [Laughs].       I always get asked what caused this condition and get weird looks from people on the streets. Some actually get scared. With the awareness program, my aim is to educate people about OI and also other types of disabilities.

Where do you see it five years from now?
Deborah: five years from now, my wish and prayer is that I will have reached hundreds of people educating them on disability, I will have started a form of gathering for people with disability. It is important to meet people that are going through the same thing you are going through and to just have mad fun together.

IMG_20180102_202103

I can’t let you go without asking you the craziest thing you have done. You seem so full of life.            Deborah: [breaks into laughter…again]. Well…when I was at college, I got on a bus with my friend. We wanted to go to the mall and the bus was our only option. The only problem is buses in my country are not so wheel chair friendly. We actually held up the passengers a bit because we had to figure out where to put my wheelchair and where I would sit. I will always be very proud of myself for doing that. I believe I can do anything and disability should not hold me back from trying or achieving my goals and dreams or just…living.

What is your advice to people living with disability?                       Deborah : my advice would be to just be happy. When laughter and joy are upon you…be happy, enjoy life, spend time with those you love, dream. Also, I consider it one of my blessings that I was able to finish high school and start college despite the many setbacks. I would encourage everyone to do so too, especially my fellow country mates. Develop a skill or advance yourself academically. There are organizations that help us with such things. Reach out.

Thank you for sharing your story. What are you going to do immediately we are done?               Deborah: Snapchat! I love taking photos.

IMG_20180102_201944IMG_20180102_201929.jpg

https://dailypost.wordpress.com/prompts/treat/

Advertisements

9 thoughts on “Living with Osteogenesis imperfecta- Deborah’s story.

  1. Chilinda, I’m so proud of you for posting this. Also, I’m in awe of the strength and determination of your sister Deborah. She has not only achieved what people in her state usually give up but also she is so full of hope. I salute her. I am sure its treat to know your sister Deborah. Say my hello to her.

    Liked by 1 person

  2. Your sister Deborah sounds like an absolutely bundle of joy. I’m smiling as I write this post because it warms my heart. I have a brother with cerebral palsy, so I know how disability impacts a family. They are one of the most underrepresented groups of people, so I’m glad you shared your sister’s story. You’re amazing! Would you mind if I reposted this on my blog? 😊

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s