• Rare Disease Day • I’m facing two rare diseases from my severe battle with COVID, so it’s a perfect day to share awareness of diseases that most people have never heard of:
Constrictive Bronchiolitis
Less than 1 in a million people are diagnosed with this. Also known as bronchiolitis obliterans, or small airway disease, it is a rare and serious lung disorder that causes inflammation and scarring in the smallest airways.
As those airways narrow, airflow becomes restricted – leading to shortness of breath, persistent cough, and reduced exercise tolerance. The damage is irreversible and typically progressive. Treatment focuses on slowing progression and managing symptoms.
It appears to stem from extremely rare post-COVID lung fibrosis. It’s a form of pulmonary fibrosis. There is still much we don’t know. We’ll monitor closely to see how quickly the scarring progresses. My prognosis is still variable.
I will stay diligent with my diet, maintain the right balance between rest and activity, get plenty of sunlight, and keep finding ways to do the things I love with the people I love. I will continue regular follow-ups with my strong medical team.
ANCA-Vasculitis
ANCA-associated vasculitis affects about 10 people out of a million each year. It is a rare autoimmune disease in which the immune system mistakenly attacks small blood vessels.
This inflammation can restrict blood flow and damage vital organs – most commonly the kidneys, lungs, sinuses, and nerves. Without treatment, it can escalate quickly and become life-threatening.
I have the subtype called Granulomatosis with polyangiitis
(GPA), which forms clusters of inflammatory cells that damage tissue.
It has affected my eyes (iritis), nose and sinuses, ears (hearing loss and tinnitus), heart, esophagus, and joints. It is still unclear how much this disease has contributed to my lung condition.
I just began treatment with rituximab infusions to suppress the immune system and push the disease into remission.
Fatigue is a major daily challenge – a symptom of both diseases.
Both are invisible, yet demand resilience, vigilance, and strength every single day.
And, for me, plenty of prayer, hope, and positivity.
Ten Thousand Days 