I have five rare disorders: Chiari malformation, intracranial hypertension, chronic Epstein-Barr virus (EBV), fibromyalgia, Hashimoto syndrome, along with a plethora of other illnesses. An infectious disease doctor once told me that I was a poster child for the medical field. However, my journey with rare disease began far before I was diagnosed in 2009.
Living with a rare disease makes you grateful for everything that most people take for granted. Four brain surgeries later, I go on. The chronic EBV destroys my immune system, so I must be very careful about avoiding illness, which has been especially difficult due to the pandemic.
I would love to be able to clean my home, mow my yard, work in my gardens or just play with the little ones at family gatherings. My mowing days are long past, and although I do still go out and work in my flower gardens, I always need help.
I am lucky that my family and friends support me as I live with rare disease. I plan ahead, but I never know how I will feel. I’ve filed for disability so many times that I have the paperwork memorized, yet they say that I did not get a diagnosis soon enough to qualify.
The future of my disorders sometimes seems promising, but the side effects of the medication can be worse than the disease. There is no cure for any of them, so I’ve had to learn to adjust. If you are new to rare disorders my advice is this: learn everything you can about your disease and be proactive in your care. I share my story because I have lived many years with rare diseases, and I’ve learned a lot. If in anyway it can help someone else, then it has served.
The National Organization for Rare Disorders (NORD) is committed to telling the stories of patients and families with rare or undiagnosed diseases and helping them live their best rare lives. If you would like to share your story, contact NORD here.
