Suzanna DePaolis views her life with a rare disease as a battle, one that she is conquering. This battle began fourteen years ago when she was diagnosed with eosinophilic granulomatosis with polyangiitis (EGPA), a form of vasculitis. Although she has had to make big adjustments to her life, as many rare disease patients do, she is conquering vasculitis.
Eosinophilic granulomatosis with polyangiitis (EGPA), which used to be called Churg-Strauss syndrome, is a form of vasculitis. While it shares many similarities with granulomatosis with polyangiitis, the presence of the eosinophils distinguishes it. It typically impacts middle-aged individuals who have seen a recent onset of asthma or recently worsened asthma. In fact, asthma is one of the characteristic features of the disease. Other symptoms include nasal polyps, allergic rhinitis, rashes, nodules on the skin, hypertension, glomerulonephritis, pain, numbness, tingling, and lesions that can appear in the GI tract, heart, and spleen. Medical professionals are unsure as to what causes this condition, but they suspect that it is a combination of genetic and environmental factors. Regardless of cause, treatment typically consists of prednisone. Other immunosuppressants or steroids may be prescribed as well.
Suzanna, now 40, was diagnosed with EGPA fourteen years ago. At the time, she was living a “medically boring and ordinary” life. That all changed when she woke up with hives and a cough. While both she and her doctor were initially disinterested in these common symptoms, they became more concerned as her symptoms grew more severe over time.
She began seeing numerous specialists, attending many appointments, and searching for the reason behind her symptoms. By the time she finally received a diagnosis, she was on a first-name basis with all of her doctors.
Although it was a relief to finally have a diagnosis, Suzanna’s battle did not stop there. Many of her doctors hadn’t even heard of her condition, and she continued to experience symptoms. Despite the multitudes of treatments that she has tried, she has never been in remission. She is okay with this, as she realizes that it’s all part of the battle.
The battle of living with a rare disease does not end after diagnosis or treatment, Suzanna says. She is conquering her condition both physically and mentally.
To read her story, click here.