There are 30 million Americans suffering from a rare disease. On Feb. 28, millions of patients and their families will focus a spotlight on rare diseases as a global public health concern. We hope to promote awareness of the challenges, hopes and needs of those living with rare diseases.
The term “rare disease” is described by the National Institutes of Health as “… a disease that affects fewer than 200,000 people in the United States at any given time.” There are almost 7,000 rare diseases described in medical literature today and it is reported that 1 in 10 Americans are living with a rare disease.
Bonnie Schulz, a resident of Camano Island, was diagnosed with Retroperitoneal Fibrosis in 2009 and in August of 2012 she was diagnosed with an ultra-rare disorder called Erdheim-Chester Disease. It is reported that less than 600 cases have been documented in the world since it was first described in 1930. Very little is known about ECD that diagnosis is often very difficult. To complicate things, patients do not always exhibit the same symptoms. Many times a patient may experience symptoms that are normally associated with other less rare, and more well-known diseases. This makes it very difficult to arrive at a proper diagnosis. The medical community doesn’t even yet know how to classify Erdheim-Chester Disease. Weather ECD is a cancer or an autoimmune disorder is yet to be determined.
After being diagnosed we found that none of the doctors in our network had ever heard of ECD nor could we find a Doctor locally that had ever treated a patient with ECD. In our search for support we found ECD Global Alliance they are a group of volunteers, patients and family members who have joined together to provide patient support and raise awareness of the disease. Through fundraisers and donations, the organization has funded two ECD research studies. ECD Global Alliance’s mission is to be an active catalyst for the promotion of patient needs.
For more information about ECD and rare diseases, please see the following links:
Erdheim-Chester Global Alliance (a patient advocacy group supporting those affected by ECD) – www.erdheim-chester.org
Rare Disease Day — www.rarediseaseday.org/article/what-is-rare-disease-day; (sponsored by EURODIS and the National Organization for Rare Disorders)
ECD education films (20 minutes, 2 minutes or 30 seconds) with no copyright restrictions www.youtube.com/channel/UCYR3skRhqAFWC5PTOGv34JQ
Phone 360-572-4085 or Email me at joboschulz@hotmail.com
With all the best,
John and Bonnie Schulz
Camano Island
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