I had know idea!

The story of lucy

Lucy had suffered with sinus infections and profound fatigue for over 18 months, multiple courses of antibiotics with small little breaks in feeling sick. She became very ill with severe facial pain, fevers, sweats, rashes and joint pain, and was hospitalized under the care of an ENT after failed outpatient treatment. Lucy was diagnosed in September 2009, with a vasculitis condition called Wegener’s Granulomatosis. We remember the day vividly, we were like ” you have what”. It was that sense of being in a foreign land, and you were being given some information that did not make sense, you thought for sure it must be wrong and your immediate reaction was “No way”. That set the tone of Lucy being in treatment and trying to learn as much as she could as fast as she could about something so rare. It’s listed on the National Registry of Rare Disorders, yes there is such a registry. It is an auto immune vasculitis that has a precarious pathway to diagnosis and even a more precarious pathway to being subdued or put in “remission” as they say. It’s like, where do you belong when you have such a condition? A dear friend said, you know such a disorder put’s you in a place of “where do you fit in”. It is not a disease many know about or have an understanding of. “Wegs” is certainly not an easy condition to explain to others and even today Lucy gets that look like ” you have what”? Lucy has soldiered on and bravely endured a rigorous treatment regime and many hospital stays over the course of the last four plus years. She has significant damage to her nasal/sinus area, had has some pulmonary issues and is post a total hip replacement. She continues on this journey of treatment, managing side effects, adjusting to the life altering impacts and the unusual and hard to anticipate “flare ups” that this brings. It reminds me of a smoldering fire that can lie more dormant and quiet then shoot off a spark or ember that flares into a hot spot. It is a hard condition to “contain and control”. Lucy’s life has changed is so many ways, she is so very thankful for this time in her life when the better days outweigh the not so good days. And for the love, care and support of an amazing extended family and community of friends. Lucy brings awareness and education to others at every opportunity possible, in hopes that more research, treatment options and awareness comes to this and other rare conditions.