This blog was created for Francie Fitzgerald, a twenty-year-old girl battling a rare, chronic disease. The purpose of this project is so that she has a way to keep the friends and family she cares about most in life updated on her health status and general whereabouts. Francie grew up happy, healthy, and highly-achievement oriented for the majority of her life. In high school, as a tri-Varsity and club athlete at a competitive private school outside of Philadelphia, PA Francie was recruited and committed during her sophomore year to play D1 field hockey at Dartmouth College. Prior to this time Francie had suffered from seemingly unmeaningful yearly bouts of Strep throat infections, contraction of Lyme in 2005, a significant incidences of broken/fractured/bruised/torn bones/tendons/ligaments, and two sport-related concussions in 2008 and 2009- but it was not long after her 2010 spring semester ended that the unfortunate slew of events began to unravel. That summer Francie participated in an exchange program with the Herschel Girl’s School in Cape Town, South Africa. While abroad she enjoyed touring with the field hockey team and running cross country in regional meets, as well as spending time with incredibly generous friends, who soon felt like family. After soaking in the excitement of the World Cup games, about half way through her stay Francie was infected with Epstein Barr Virus and fell ill with “Grandular Fever,” or the infamous American version, “Mononucleosis.” Francie returned home and despite following the doctors orders for strict bed rest, she has never returned to health since. Further, over the years since that time her condition has become degenerative and debilitating.
Francie originally spent three months searching for a proper diagnosis, which she didn’t receive until she saw the head of infectious disease at John Hopkins University Hospital. The physician specialized in misdiagnoses and very quickly recognized and pinpointed that Francie had acquired a condition known as “POTS”- Postural Orthostatic Tachycardia Syndrome. This form of Dysautonomia, a chronic malfunction of her Autonomic Nervous System, affects nearly every bodily function below conscious control within her. Francie therefore experienced a plethora of wide-ranging and far-spread symptoms including, syncope, migraines, postural tachycardia, hypotension, and fatigue. She was referred to a POTS cardiologist at Children’s Hospital of Philadelphia (CHOP) who experimented with various drugs and dosages over the next months, eventually settling on a Beta-Blocker and stimulant to compensate for her symptoms.
The medications stabilized Francie enough to begin attending the Hill School with a modified school schedule. During this time Francie participated in an intense daily physical therapy to work on conditioning and nerve desensitization. Enjoying being back in academically rigorous courses and befriending new people she was lulled into a bit of complacency and did her best to ignore her unexplainable deterioration. Despite the deterioration of her health, Francie’s perseverance shone bright as she finished high school with a stellar academic record, proudly gained early decision admittance to the University of Notre Dame, and based on her exceptionally high SAT scores, was offered a spot in the University’s Glynn Family Honors Program. Francie attempted diving in with both feet, relishing in Our Lady’s University, making fast friends, including being asked to take the Eucharistic gifts with Hannah Smith to University President Fr. John Jenkins at the Orientation Mass, and embarking on a bitter-sweet journey that has included meeting and becoming friends with a couple dozen of the greatest young people this world has to offer, all of whom Francie has cherished her friendship and all of whom have supported Francie immensely in her horrific journey.
Many related and unrelated symptoms began to surface- the most difficult being chronic nerve/muscle/bone pain, mitochondrial damage and myopathy, chronic fatigue syndrome, chromic Lyme, maybe chronic EBV virus, gastrointestinal dysmotility, hypermobility and connective tissue laxity/potentially Ehlers Danlos syndrome, joint swelling and reddening consistent with autoimmune disease markers for diseases such as Lupus and Rheumatoid Arthritis, elevated Cam Kinase autoantibodies indicative of an autoimmune response at the basal ganglia and accompanying OCD behaviors, elevated CD20+ immune cells and SED rate, IgG subclass 3 deficiency with consistently and significantly elevated IgM, genetic mutations in her mitochondrial and nuclear genome along with compromising mutations indicated by a Detoxigenomic Profile, albeit Penn genetics determined mostly “variants of unknown significance”, elevated levels of voltage gated calcium channels antibodies, sweat gland biopsy revealed decreed innervation of autonomic nerves, all this among other various things.
The complexity and variety of her disorder has been staggering. She has seen at least ten neurologists, four rheumatologists, an endocrinologist, eight orthopedics, six gastroenterologists, a cardiologist, five geneticists, and numerous integrative/functional doctors. She has had biopsies, MRIs, CAT scans, urine analyses, stool sample testing, and over 150 blood tests at CHOP, Penn, Hopkins, Toledo Clinic, Mayo, etc. She does not like taking artificial drugs, as she recognizes how harmful they are in disabling the natural healing mechanisms of the body and resulting in mineral and vitamin deficiencies, as well as unwanted and uncomfortable side effects. She wants to find relief, and ultimately a cure, but has tried a plethora of pain medications with no abatement. At the suggestion of some of the doctors , and as warranted by emergent food allergies, she has been on a strict vegan diet, lactose-free, gluten-free for a number of years. She has tried plasmapheresis and IVIG treatments at Hahnemann Hospital to attempt to thwart the autoimmune aspect, but nothing has offered reprieve from her constant suffering. At the encouragement of friends, profession and “lay-persons” alike, Francie plans to go to the Paracelsus Klinik of Dr. Rau outside of Zurich, Switzerland in hopes of gaining knowledge and receiving treatments for relief as none has been available through her care in the States to date. Francie’s resiliency has been remarkable, but she insists it has only been made possible for her to fight this long and hard because of faith in God’s goodness and the unending care and concern from dedicated family and friends. She could never have gotten this far without you, so for that we thank you from the bottom of our heart.
-Kathy and Ward Fitzgerald*