Victoria was diagnosed with Idiopathic Multicentric Castleman disease with TAFRO syndrome in January of 2016. At the time of her diagnosis she really struggled with so many emotions; grief, shock, anger, fear, frustrated and alone. What scared her the most was the statistic of there being a 5-yr survival rate for patients with iMCD. The doctor who diagnosed Victoria was not fluent with this disease at all but her main PCP helped her do research and find a specialist who they hoped could help her. Before being able to see her specialist she landed back in the hospital and had a difficult battle.
She found the CDCN through her initial search of information on Google. Initially this discovery did not mean much to her however she enrolled as a patient. It was not until she was hospitalized that she learned the true value and importance of the CDCN in her life and battle with CD. Dr. David Fajgenbaum reached out to the family to offer insight, understanding, information, and help get Victoria the best care she could have.
Unfortunately this disease has really hindered her quality of life. She has spent a great deal of time in and out of the hospital receiving blood transfusions, one platelet transfusion, dialysis for 5 weeks, sepsis 90lbs of fluid, and her muscles atrophied. In addition to the physical ailments that came from her battle with CD, she at times battles depression and anxiety. She is very thankful for the CDCN as it not only has helped her health and battle with CD, but has also connected her with other patients and loved ones who have become like family to her. She also has joined the Warrior team which gives her a sense of fighting back, doing her part to help find a cure, and the ability to help other patients.
Some advice that Victoria would like to share with any new CD patients out there “Be your best advocate. For many of us, you are the only CD patient your doctor has, and you are the doctor’s source of information on the disease. You know what’s going on with your body. Don’t let your doctor brush you aside. If you need to seek second opinions or go to a doctor that will listen to you then do that. Always use the CDCN for a source of information, as it really is the best out there. Finally reach out to other CD patients we are always willing to help or just listen if you need to vent.”
