“To whom much is given, much is expect” (Luke 12:48).
I have been battling a Rare Disease for over two years now. With the grace and mercy of God, my family and I have been able to navigate my illness steadily; however, many patients and families are not as fortunate.
Raising funds to help support the National Organization for Rare Disorders while raising awareness of Rare Diseases in honor of Rare Disease Day.
**Fundraiser ending Monday, March 2, 2020**
The aspect of NORD that stood out to me the most and really moved me to donate to this organization is RareCare; a facet of NORD which provides financial assistance and resources to patients so that they can receive life-changing and life-saving medications.
Financial assistance for those who need it especially those dealing with rare diseases hits home for me. My current treatment is a monthly injection that costs roughly $7,500 for each injection; A cost that my insurance company doesn’t deem medically necessary. I am blessed to have doctors that are constantly advocating on my behalf and that feel with their work and documentation they can successfully change the mind of the insurance company.
NORD’s Mission Statement: “NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.”
My Rare Disease Journey:
I am Dominique Dunlap a 21-year-old third-year student at The University of Cincinnati. In August of 2017, at the start of my first year of college, I came down with an unexpected illness.
The illness started off with slow progression but then progressed very rapidly. After months of countless emergency room visits and doctor appointments with little to no relief, I was hospitalized at Cleveland Clinic where I was diagnosed with a rare idiopathic disease. Eosinophilic Pneumonia, a rapid overproduction of eosinophils in the lungs.
Then, with a treatment plan in place, I was elated. I began feeling better within weeks, which was a great sign to my doctors and me. Doctors felt confident in their choice to start weening me off my medicine. Unfortunately, I quickly relapsed. After months of many more attempts to ween me off, they were unsuccessful and the aggressive side effects of my medicine at the time were wrecking me physically and emotionally. My illness was then re-diagnosed to Idiopathic Chronic Eosinophilic Pneumonia; the title of the diagnosis only changed by one word, but it changed my new reality completely. Doctors had no explanation for my illness, and they didn’t know how long I would have to remain on the medicine.
The silver lining came when Doctors found a relatively new treatment that had yet been proven to help my illness. The treatment has been a literal lifesaver for me; I experience very little effects from the treatment. My illness is now well controlled, but the likelihood of me regaining my original lung function is very low.