Patient Stories
Warren is the first person in the world to receive a groundbreaking treatment for this rare, serious genetic condition, Wilson Disease, in which excessive amounts of copper accumulates in the body, particularly in the liver and brain. Wilson Disease can cause liver and neurological damage, as well as psychiatric issues with memory, impulse control, and anger. A strong, long-term relationship between Warren and Professor of Medicine Michael Schilsky, MD, the physician who is investigating this treatment, has been essential to this novel treatment which has the potential to help patients all over the world.
- February 24, 2021
Much like the rest of the world, I have been very aware of just how serious the COVID-19 pandemic is--a health crisis in need of immediate action with African Americans dying at twice the rate and hospitalized at almost three times that of our white counterparts. So, when I was given the opportunity to participate in the vaccine trial to fight the SARS-CoV-2 virus, I knew right away that it was my inherent duty as a community leader to sign up. As a Yale Cultural Ambassador and pastor for Walter’s Memorial AME Zion Church, it felt like such a significant way to further encourage members of my community to participate right alongside me, to drive health equity in our own community and advance science at the same time.
- February 23, 2021
As a Yale Cultural Ambassador, I have been an advocate for health equity and clinical research participation for over 10 years. It has really been a cardinal mission for me to encourage engagement among those who have been underrepresented in the health system for so long. We are serving both ourselves and the wider community by doing so, not to mention, advancing science, sometimes dramatically. When the COVID-19 vaccine trial arrived at Yale, I was compelled to participate. It was a consummate opportunity to sign up and walk the walk, particularly during a time of so much fear and apprehension. We all have to be willing to be part of research in order to drive change. Most of the clinical trials I advocate for in my community are related to very specific health conditions that have affected many of those around me, but which I did not have myself. COVID-19, has touched everyone. Every one of us in some way.
- February 22, 2021
Vanessa Clayton’s story about clinical trials participation differs from most, as she was first approached to participate by her husband, Reverend Elvin Clayton, the pastor of the Walters Memorial AME Zion Church in Bridgeport, Connecticut and Cultural Ambassador to clinical research at Yale. Like many people of color, Mrs. Clayton was worried about the disproportionate impact of the COVID-19 virus on black and brown individuals. When her husband told her about the Phase 3 randomized and placebo-controlled trial looking to test the safety, tolerability, and immunogenicity of the SARS CoV 2 RNA vaccine against COVID-19, she did not immediately say yes. She decided to do her own homework to understand the research and also wanted to discuss it with family members in the health profession. Ultimately, after speaking to the study PI, Dr. Onyema Ogbuagu, and reviewing the informed consent, she decided to join her husband and hundreds of other Connecticut residents enrolling in the trial.
- November 01, 2020
When Hannah Rosenfield was diagnosed with type 1 diabetes at age 10, her mother Amy immediately looked beyond the standard treatment for something that might benefit her daughter long term. Amy’s search led her to a clinical trial at Yale for those newly diagnosed with type 1 diabetes, sometimes called juvenile-onset diabetes.
- April 01, 2019
A lifetime resident of New Haven County, Kathy (71) is also a longtime supporter of clinical research at Yale. She has volunteered for many studies involving MRI (Magnetic Resonance Imaging) machines, a technique used for visualizing the brain without radiation, so scientists can learn more about the brain and clinicians will be better equipped to treat the many diseases associated with it. One of these, Alzheimer’s disease, is what first inspired Kathy to participate in research when she lost her mother to the condition.
- January 31, 2019
Jennifer’s certainty that something was wrong started with an unfamiliar, unidentifiable pain in her kidneys. It took five years, myriad more symptoms, and many medical tests to track down the source: her own immune system.
- November 30, 2018
Lynn and her husband Frank enrolled in a research study involving stress-reduction techniques in older adult couples.
- April 01, 2018
When Mitchell was 10 months old, Amy enrolled him in a longitudinal study that started at Yale and now continues through Boston, to learn more about Urea Cycle Disorders through observation. While there is still no cure for his condition, researchers are continually learning more to develop different treatments and medications to manage it. Thanks to his formula and medications, Mitchell has been largely stable since the initial years following his diagnosis.
- January 31, 2018
John, a firefighter of 29 years, participated in a clinical research study about type 2 diabetes.