Faces of PH - National Spokesperson Charity Sunshine
CHARITY SUNSHINE
Age 22
Baltimore Resident / PAH Patient
- Charity Sunshine Tillemann-Dick, 22, is a graduate student studying voice at the Peabody Conservatory of Johns Hopkins University in Baltimore. Charity’s parents and most of her 10 siblings reside in her hometown of Denver, Colorado.
- She has pulmonary arterial hypertension (PAH) with no known cause, and is currently under the care of Dr. Reda Girgis, a leading pulmonologist in Johns Hopkins University Hospital’s Division of Pulmonary and Critical Care Medicine.
- Her maternal grandfather is Congressman Tom Lantos (D-CA), who drafted and continues to champion the Pulmonary Hypertension Research Act, a bill calling for increased federal funding for PAH research that was introduced to Congress in 2005.
- Charity is also a passionate PAH advocate, testifying in Congress on behalf of this legislation and performing at benefit concerts hosted by the Pulmonary Hypertension Association.
Media Coverage
- WUSA 9 News (CBS), morning & evening shows, March 22, 2006
Charity’s Story
Charity displayed a gift for music at an early age—as a 4-year-old she was already composing original songs. She was also a bright student, enrolling at Regis University at 14 after completing her home schooling program ahead of schedule. Growing up, Charity enjoyed soccer, swimming, ballet and exhibition ballroom dancing, although she became winded easily (a reflection, she assumed, of her non-athletic genes). In her late teens, Charity aspired to join the U.S. Marine Corps, and for several years spent up to three hours a day at the gym. She often felt faint while on the treadmill and eventually realized that despite training, she would never have the physical stamina necessary to become a soldier. Looking back, Charity supposes that these “athletic shortcomings” were actually early indicators of PAH.
Signs & Symptoms
In the year leading up to her diagnosis, Charity experienced four fainting spells spanning two continents. Charity attributed the first episode (occurring in the crosswalk of a busy Denver intersection) to stress from a busy year campaigning for her father’s city council bid. Both of her parents had similar episodes around her age, so she was not overly concerned. Shortly thereafter, Charity traveled to Hungary on a family vacation, and ended up staying for an entire year. On a whim, she attended a voice lesson at the renowned Franz Liszt Academy of Music in Budapest. She so impressed the teachers there that she was offered immediate entrance into the school’s intensive five-year music program.
In following months, her vocal and cultural development flourished while her physical condition continued to deteriorate. Additional fainting episodes, shortness of breath, and weakness led Charity to seek medical attention. Hungarian doctors suggested that she increase her salt and caffeine intake to lift her blood pressure and consume more red meat to cure mild anemia.
Diagnosis and Treatment
Charity returned home in the spring of 2004, eager to start a new journey as a missionary for her church. She visited her local doctor’s office for a required physical examination, and to get to the bottom of her constant exhaustion. When Dr. Susan Wells at the Kaiser Permanente clinic listened to Charity’s heart, she immediately ordered an echocardiogram (EKG). Based on her symptoms and abnormal EKG results, Charity was given a probable diagnosis that day—PAH. Researching the unfamiliar disease on the internet that night, she quickly learned about PAH’s potentially bleak prognosis—which was, in Charity’s words, an “interesting” reality for any young woman to face.
In June 2004, Charity’s diagnosis was confirmed and she began treatment with an oral therapy. Soon after, Charity moved to the lower altitude of Washington, D.C. to attend school and receive care at Johns Hopkins. After a semester, doctors switched her to epoprostenol, an intravenous medication pumped continuously to her heart via a chest catheter, in order to better manage her advancing symptoms. She conceals the drug’s external pumping device in a designer handbag that she is never without—a practice that new acquaintances sometimes mistake for a “fashion obsession.”
Since diagnosis, doctors have added spironolactone and lasics (diuretics), and digitalis (heart function regulator) to Charity’s treatment regimen. Of her own accord, she also practices alternative therapies, such as Qi-Gong massage and a salt-free, macrobiotic diet. Epoprostenol can be difficult to tolerate, but Charity believes that her holistic lifestyle has helped to minimize side effects of her medications. Today, she visits Dr. Reda Girgis at Johns Hopkins once a month, and still consults with the cardiovascular team at Kaiser and the National Institutes of Health.
A Tireless Advocate
As the grandchild of a Congressman and first female Lieutenant Governor of Colorado, Charity inherited a strong sense of ambition. She first took an interest in political advocacy as an undergraduate, where she founded and secured federal recognition of National Civility Week. As she learned more about PAH, Charity realized that the patient community needed her help.
She equates PAH to “paralysis without a wheelchair.” While many patients appear healthy on the outside, it is a daily struggle to perform the most mundane tasks such as carrying groceries or climbing a flight of stairs. People often have difficulty understanding something they can not physically see, so Charity joined the fight to bring national attention to PAH. Last December, she gave an impassioned speech at a Congressional hearing examining federal research efforts for PAH. Other advocates, including her grandfather, joined her in this fight to secure the passage of the Pulmonary Hypertension Research Act, which would allocate $250 million over five years for research toward a cure for PAH.
Charity has also helped to raise the disease’s profile by singing at PAH benefit concerts. In June 2005 she sang at a Pulmonary Hypertension Association (PHA) fundraiser at the Kennedy Center, accompanied on piano by Secretary of State Condoleezza Rice. On March 22, she will join the Hungarian ambassador’s rock band, Coalition of the Willing, at “Rockin’ for the Cure,” a benefit concert hosted by the Embassy of Hungary and the PHA in Washington, D.C.
Charity’s Outlook
The word “fear” has never been included in Charity’s vernacular; she lives by the credo that “life happens, you deal with it and you move on.” Her large and extremely supportive family and very strong religious faith have carried her through some difficult moments—she feels blessed to have both.
Charity says that in the two years since her diagnosis, it’s been interesting to see how her life has changed so much, and yet it hasn’t changed at all. A sense of hope and urgency accompany her most days of the week. Like any woman in her early 20’s, Charity is excited to see where life (and in her case, her voice) takes her next. At present, she is completing an opera she was compelled to compose after witnessing the aftermath of Hurricane Katrina. She’s also singing at six more concerts this semester, in preparation for her national debut this fall with the Cleveland Symphony, where she’ll be performing a Hungarian program. Charity says that “singing feeds her soul,” and she plans to continue sharing her voice with the world.
Charity’s message to patients: “We’re on the horizon of major scientific breakthroughs in PAH, but nothing will happen unless the public is mobilized. PAH is largely a women’s issue, and women especially need to speak up for themselves and advocate for a cure.”
