This is the face of a person with a rare disease and multiple disabilities:
Rare Disease Day is always the last day of February every year. The education of disability in the United States, and nationwide is not where it should be. A problem exists because disability education is not always available. Many people don’t know what certain disabilities are and so they don’t know how to act or react appropriately.
Let’s take a look at what a rare disease is.
A rare disease to be called rare would need to fall below 200,000 cases. When you take the 7000 delineated rare diseases in the United States, add in rare conditions, diseases, and disorders more commonly being treated with another problem we have a number closer to 25 million people in the US and nearly 400 million people worldwide.
My daughter, Tabitha, lives with a rare blood disorder, Antiphospholipid antibody syndrome (APS) or Lupus anticoagulant. She has Factor V (five) Leiden thrombophilia, and while Factor V Leiden isn’t a rare disease, it increases the opportunity for blood clots to form. Tabitha’s APS was responsible for recurring miscarriages, and the premature birth of two granddaughters.
At 38-years-old, my daughter lives with depression, anxiety, PTSD, fibromyalgia, osteoarthritis, and chronic pancreatitis. She is being tested for other problems as well. She and I call our medical charts rap sheets…pages long, not lines or paragraphs. Whenever a person has one disability, you should note they may live with other illnesses and disorders.
Some disabilities are observed while others remain invisible.
For example, you are probably familiar with muscular dystrophy, but Chron’s disease, fibromyalgia, blood or neurological disorders are disabilities you can’t see on the outside. I am not a medical professional. I read and I research. When you have a family with a large number of disabilities, you learn to research. Having medical problems costs money. Money not only for those who have disabilities but for our communities.
Don’t forget. February 28, 2017, National Rare Disease day.
A blood disorder, like my daughter’s, is only one rare disease. Take time between now and the end of February to investigate and educate yourself so you can encourage those around you living with a rare disease. There are plenty of organizations looking for donations, volunteers and more. If all you can do to help raise awareness is share this post or direct someone to the pages listed below, you’re still taking a step in the right direction.
Rare Disease Resources
How do you think learning about disabilities is important to you, your family, and your community? Click the comment link beneath the titles of my posts to weigh in with your opinion!