What it’s like adjusting to life with 2 rare blood disorders
A columnist with PNH and aplastic anemia shares what it means to 'live rare'
What does it mean to “live rare”? After I was diagnosed with two rare blood disorders, aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), it took me years to understand how to navigate tough times and adapt to life with my rare diseases.
According to the National Organization for Rare Disorders, “a disease is considered rare if it … affects fewer than 200,000 Americans.” There are about 7,000 rare diseases that affect 25 to 30 million people in the U.S.
My life changed overnight as a result of my diagnoses. Suddenly, my days were filled with doctor appointments, extensive testing, and insurance battles. I spent a lot of time researching my illnesses and building relationships with the rare disease community.
What I now face
For me, living rare isn’t just about fighting my blood disorders; it’s also about navigating many “what-ifs” and dealing with complicated situations. I have to ask myself many questions as I go about my everyday life.
For example, will going to the store, giving someone a hug, or getting on an airplane cause me to get sick? Aplastic anemia and PNH weaken my immune system, making me more susceptible to illnesses and infections.
If I got sick, it could lead to a long night in the emergency room. Would the doctors and nurses be familiar with my blood disorders, or would they have to Google them?
As a result, I’m fearful and cautious of my surroundings. I often find myself researching topics such as why there are so many germs at buffets, or how to ask for plastic silverware at a restaurant. Sometimes I’ll avoid going out or shaking people’s hands because I’m so worried about getting sick.
This constant concern is only one way that living with rare blood disorders has affected my life. In addition to battling PNH symptoms, I also spend a lot of time educating others about my diagnoses and connecting with fellow rare disease patients.
I’ve had to learn to listen to my body and find routines that work for me, especially while working a 9-to-5 job and traveling for business and pleasure.
Navigating these changes has taken time and patience, but I’ve learned to adapt and understand what works best for my body. If you’re struggling to adjust to living rare, know you’re not alone. You’ll get through this.
Note: PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.
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