My Life With Osteogenesis Imperfecta

(Picture source: New England Journal of Medicine)
As requested I write a short post about how I live with Osteogenisis Imperfecta every day. You might have heard about it or maybe never so this is an opportunity to read about this rare condition. I want to use this little platform to share with you a little bit about this not so known bones disorder. If you carefully look the picture of the New England Journal Medicine that I put above, you will see that Osteogenesis Imperfecta has different types. It goes to Type I to to type IV.
First, I would like to give you the broad definition of Osteogenesis Imperfecta that I found in a medical website:
Osteogenesis imperfecta (OI) is a genetic disorder characterized by bones that break easily, often from little or no apparent cause. That definition really describes my day to day fear and worries which is breaking my bones accidentally and for no reasons. As shared in my first post, the pain is something that I deal with on a regular basis. It had been a difficult situation to accept myself as being different than other kids at the time I was a child. Going to school back home was a challenge not only physically but also emotionally because people would always look at me as if I was a strange creature or something like that. I learned with time that people have hard time accepting differences moreover when that difference is obvious.
I had to face those challenges everyday. Knowing in my early age that I might be limited in many aspects of my life was sad and heartbroken. I had to and still have to rely or depend on someone else to help me doing some of the things but basically I learned to do things on my own like cooking, doing crochet, sewing, cleaning the dishes and my home. I mean I do a lot on my own! I am proud of the courage that I have. I go to do my groceries. I do my best to depend on no one for basic things and my closed ones are impressed!  Back in my early days, people would even think that I could not live long because of that condition. Of course, I went from surgeries to another one and another one. Surgery is a part of my life yet I am still passionate about life! Today I am a complete adult even though I still live with Osteogenisis Imperfecta I learned to accept myself the way I look. I am still here moving and active.  I learned that people will accept you only when you do accepting yourself. So everyday instead of having them looking at me like...strange being, I go straight to them with a smile and I say "Bonjour!" 

    I learned to be social when as a teenager I could barely show myself to people to avoid mean words, and being mocked. I refuse to be hidden. I decided to go out and meet people.  My pain is real but I refuse the pain and my medical condition to dictate my life. I usually wake up with difficulty breathing because as you can see on the picture, the bones are really broken and being a Type III makes it really uncomfortable to breathe easily. People cannot complain about their difficult situations or conditions because mine is not easy at all. When they see me they understand that there is no reason to mop and cry but there is always a reason to stand up every morning with a dream. They see hope when they see me around doing my things. My life and my story is a true inspiration because when people around see me they see a courageous lady who appreciates life. A lady who is not afraid to be thankful about the gift of life and still have ideas and projects in her diary. I am passionate of Arts in general, so i paint and draw pictures in my free times as well. I have a lot to share to he world. When I decided to create Otiti Design, I first started with crochet but then  decided to go with something more exciting and bold. Some purses adapted to any occasion and original. Thank you to support my dream and my brand by buying my purses. You can always viist me on social media. My Facebook page Otiti Design and my Instagram @otitidesign.
 I sometimes search and look for people who also have my medical condition and achieved great things. When I was at the hospital in France where I live, I discovered the music of  Michel Petrucciani a well known pianist. He was gifted and talented. I met his son as well who told me about his father. You can also see his concerts that he gave years ago around the world. Thank you for reading my story and my post. I invite you to listen to his music
Michel Petrucciani "Looking Up"
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