Rare Disease Day 2016 – Osteogenesis Imperfecta

Rare Disease Day takes place on the last day of February each year. This year, since we’re in a leap year, it’s Monday, February 29th! Join me in spreading the awareness of Osteogenesis Imperfecta!

What is Rare Disease Day?

The main goal of Rare Disease Day is to raise awareness amongst the public and decision-makers about rare diseases and their impact on patients’ lives.

A disease is ‘rare’ when it affects less than 200,000 people here in the United States.

Osteogenesis Imperfecta (O.I.), aka Brittle Bones, is a very rare disease. Although I don’t like to call it a disease, I like to refer to it as a disorder instead. So, this bone disorder that I have affects approximately 25,000 – 40,000 people. The number varies due to the fact that there are people with mild forms that sometimes go through life undiagnosed or get diagnosed late in life.

Quick OI Facts

  • There are 16 known ‘Types’ of O.I.
  • Most fractures will occur during childhood
  • There is no cure
  • Focus is on treatment to reduce fracture rate and increase bone density
  • Surgery to insert rods into long bones and other hardware is frequently performed
  • Drinking more milk alone will NOT make our bones stronger
  • Intake of additional supplements, such as Vitamin D, Vitamin K, and Calcium will help to increase bone density
  • Physical exercise and movement is important to maintain and build muscle mass to protect our bones
  • O.I. is a collagen disorder, so it affects more than just the bones. It also affects connective tissue.

Now, as you all know, I work hard to Disable My Disability by focusing on good health, fitness, and keeping a positive, pro-active mindset, but the effects of this disorder vary. There are many children and their families who deal with hardships because of frequent breaks. This extends into adulthood for many people with O.I. due to lack of activity and additional fractures.

How do we celebrate Rare Disease Day?

So, on this RARE DISEASE DAY 2016, I ask that you share with your family, friends, co-workers, etc. the fact that you know someone who has a rare disease (disorder) and it’s called OSTEOGENESIS IMPERFECTA!

Share in person, face-to-face.

Share on your social media! You’ll see the ‘Share’ buttons at the bottom of this post!

CLICK TO Tweet: I know someone with #OsteogenesisImperfecta (O.I.), Brittle Bones, a #RareDisease. Spread awareness! #RareDiseaseDay2016

Share wherever you can so that we can bring more awareness to Osteogenesis Imperfecta.

You can use the picture that I have created for this Blog Post and re-post it on Social Media and send them to this post so they can read and learn about O.I.

Let me know if you have any further questions about O.I. or Rare Disease Day and THANK YOU FOR TAKING PART IN THIS MOVEMENT WITH ME!

#DMD #DisableMyDisability