Rare Disease Day 2019

February 28th is Rare Disease Day® .  Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients and the community.
 

In the United States, a disease is considered rare if it is believed to affect fewer than 200,000 Americans. Nearly 1 in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are children.

Do you know which diseases are considered rare diseases by the NIH's Office of Rare Diseases Research? The following ovarian cancers are considered rare:

Ovarian cancer
Ovarian carcinosarcoma
Ovarian epithelial cancer
Ovarian germ cell tumor
Ovarian low malignant potential tumor
Ovarian small cell carcinoma

To learn more about any of those ovarian cancers just click on the name above. 

Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face.  It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe. Rare Disease Day is sponsored in the U.S. by the NationalOrganization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to the identification, treatment, and cure of rare diseases.
 



 If you are on social media and have a rare disease you can use this template and show your stripes on this Thursday , February 28th. 

My stripes are rare. I have _____, a #raredisease. #ShowYourStripes #RareDiseaseDay {upload photo of yourself}

I'll be sharing this blog post as a way to raise awareness. 

Dee
Every Day is a Blessing!

The Loss of Another Teal Sister- Nicole

Just about a year ago I wrote the post It Really is About the Attitude . It was about Nicole Christison , my friend Larry's niece. I met her at his son's wedding. Nicole was battling ovarian cancer. Ovarian cancer like mine but at the same time different. Instead of the serous epithelial type I had, Nicole had the small cell subtype. Small cell Ovarian Cancer is a rare disease which accounts for about .1% of all the ovarian cancers diagnosed.

Today I learned that Nicole lost her battle with cancer.She was 29. What a courageous battle she fought.

It is hard to explain how I feel right now. I am sad. And I am angry. Angry that another young vibrant life has been lost to this disease. Angry that we don't have a better understanding of this subtype. Angry that because the subtype is so rare that novel treatments and clinical trials to test those treatments are scarce.(Oncology review)

What can I do ? What can you do? Together we must raise awareness of all types of Ovarian Cancer and just as important we must fund research into all subtypes of the disease.

I will do this for Nicole.

Rest in Peace Nicole.

Dee

Every Day is a Blessing!

It Really is About Attitude

Last year at the wedding of a dear friend's son, I met our friend's niece, Nicole. Her hair was short but her smile was infectious and she spent lots of time out on the dance floor.

This is her story. It appeared earlier this week in the Gloucester County Times. ( Double click on the image to make larger.) Nicole is 28 years old and she is battling a rare form of small cell ovarian cancer. She takes life 3 weeks at a time and continues to teach and travel whenever she can. She is one strong Woman of Teal , supported by a loving family and just one more reason we need to find a cure!

Dee

Every Day is a Blessing!